CREATE YOUR SHIRT & CHANGE A LIFE

Bacon & Juice Boxes for POAC

August 13 - August 26

In this campaign the star of the show is: Eric. Now navigating his teenage years, he still surprises us daily. The days aren’t always easy. We try to remember the happy and survive the sad. We are blessed with the greatest extended family on the planet. Without their help our family may have crumbled a long time ago. It definitely takes a village.

We love getting to share our journey with all of you — we lovingly refer to as our “Bacon Bits.” It’s like having an enormous super secret and very special extended family. Thanks for sharing your lives with us.
The “Bacon” Family www.baconandjuiceboxes.com

Proceeds will be donated to:
POAC Autism Services

POAC is dedicated to helping children and adults with autism achieve their fullest potential by providing quality education, support and recreation at no cost to participants.

POAC provides free training for parents and educators; free recreational and support services to children and adults with autism and their families; and free training for police and first responders which, we are proud to say, has saved the lives of children with autism all over New Jersey.

Additionally, POAC supports ongoing quality research and promotes legislative issues that impact those with autism and their families. POAC is meeting the needs of those with autism in a very real way every day.
www.poac.net
  • Artist

    Anna & Eric

    14 yrs old

Anna Turning is a 17 year old full time student and competitive gymnast. She has grown up along side her 14 year old brother, Eric who was diagnosed with autism at age 2.5. She has been involved every step of the way, and has been his best teacher and therapist and also is his biggest fan. She didn’t grow up with the typical sibling experience, and many times has had to make sacrifices about her own wants and needs for the sake of her brother. She is wise beyond her years and has become a vocal advocate for autism awareness with her peers. She regularly volunteers in programs or initiatives for special needs children such as: gymnastics classes, buddy programs and even at therapy centers.

Eric’s favorite place on the planet is Sesame Place- and he loves hugs from his friends: Cookie Monster, Count, Bert and Ernie. At home, Eric’s favorite thing to do is ride his hoverboard. He loves water slides, and jumping waves in a pool or ocean. He just graduated 8th grade and has moved on to a new “high school” for special needs children.

You can read more about the family’s journey at Bacon and Juiceboxes or “Bacon and Juice Boxes” facebook page.


Brendan’s Bucket List

July 30 - August 12

This campaign is raising money for Brendan "Rare Heart" Davies. At two Brendan required a heart transplant, and then developed cancer which he beat, only to recently be diagnosed with a terminal lung condition. All proceeds will go to help Brendan's family give him the quality childhood that he has missed thus far.

Brendan's Story

Brendan is a very unique young man. He is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias. For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

As his mom, my whole entire goal now that he is finally getting older (when they weren't really sure he would make it to the age of 2) is to make sure he has a quality life. It is not realistic to think he's going to live forever because even now, behind his shining spirit and active life, his medical team and I are trying to control his blood pressure, his ability to breathe, and balance all his medications. The damage that some of his medications can cause his organs has sort of been held at bay but it's starting to catch up with him. I can't promise quantity, so quality is the goal. I would love to get a portable oxygen condenser for when he starts needing oxygen more consistently, heck, I'd love to get any equipment that insurance won't cover that will make him as mobile as possible. Brendan was switched over to a palliative model of care about two years ago because he's tired of being poked and prodded and he just wants to be outside the walls of the hospital. Palliative care gives him a voice that he wasn't allowed to have because he was "too young" and I was still living in fear of losing him.Palliative care makes it so he can go and spread his infectuous joy and courageous spirit with everyone he meets. He inspires so many people because he is able to just be now and he is just so cool. It's hard to stay in a negative frame of mind when someone so young and so sick can still be bouncing around even though, clinically he's nearly to the point where he could have a major stroke. He doesn't look sick much of the time and that is a testment to his powerful spirit. Brendan loves meeting people and anyone who is willing to get down to his level is offically good people in his mind. He is wise beyond his years and empathetic and just wants everyone to have fun in life with him. We are grateful to be part of this campaign to raise funds and awareness for other's trials and journeys as well.

Sincerely,

Brendan's mom,

Genevieve Davies
https://www.facebook.com/search/str/Personal+Website/keywords_pages/?ref=page_about_category
  • Artist

    Brendan

    7 yrs old

  • Artist

    Paper Clouds

Excerpt from Brendan's Story: Brendan is a very unique young man; he is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias.

For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy boy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

Sincerely,

Brendan's mom,

Genevieve Davies

Any time you purchase a Paper Clouds Logo design, 50% of the proceeds go directly to the charity of that campaign!!


Flash Campaign 2

July 16 - July 29

Our next campaign is a mix of people and we are calling it our Flash Campaign 2 because we got the art so quick and planned the project less than a week ago. This campaign we will be raising money for Team Logan, Arizona Camp Sunrise, Arizona Cancer Foundation for Children, Xia-Gibbs Society, and Brooklinn.

Arizona Camp Sunrise

Arizona Camp Sunrise & Sidekicks is dedicated to providing exciting and fun, medically staffed, year round programs for families who have been affected by childhood cancer.

Arizona Cancer Foundation for Children

Arizona Cancer Foundation for Children is a 501(c)(3) non-profit foundation whose mission is to provide social, emotional and financial support for families managing the health and well being of a loved one with pediatric cancer. We pride ourselves on providing practical support directly to families.

Xia-Gibbs Society

Xia-Gibbs Syndrome is a genetic disorder caused by a mutation in the AHDC1 gene.

The mutation is 'de novo', which means that it arises spontaneously in the child and is not passed down by either parent.

The condition was discovered in 2014 and already a small number of people around the world have been diagnosed, most of them children. This means that little is known about the condition and how it might affect people in adulthood.

People with Xia-Gibbs Syndrome experience global developmental delay which is thought to lead to intellectual and physical disabilities of varying severity. Some people experience sleep apnea and require breathing support at night, some have seizures. Many require significant care and assistance from their parents and other family members.

While little is yet known about the condition and only a small number of people have been diagnosed, it is likely that there are many more with the syndrome around the world whose families and doctors are simply unaware of the condition and remain without diagnosis.

Brooklinn
Brooklinn was born with profound hearing loss, she wears cochlear implants which are good in small groups, but large groups it is difficult for her to hear and she misses out on things. We are raising money for an FM system that connects her cochlear implants. Whomever is speaking wears a microphone and what they say goes straight to Brooklinn. She LOVES to draw, she doesn’t go anywhere without her sketch pad and colored pencils. When she’s not drawing she loves playing volleyball and is active in 4H where she is her clubs Historian. She shows chickens, cavvy and rabbits. She also does sewing, crafts, photography and wood working. She likes reading Goosebump books and the Dear America book.

Team Logan

As some of you know, Logan was recently diagnosed with a thyroid disorder. Medication is now a part of his daily life, and exercise is going to be a huge part of our routine moving forward. We are lucky enough to have an empty space in our home that we will be converting into Logan's fitness room, and it will be customized to his needs, likes and limitations. He has spinal issues, and therefore will be working with some specialists to make sure everything is perfectly geared toward his health and safety.

So we have brought Logan's Slombie design back out to help him with his needs. Half of the proceeds will go directly towards his medical bills and help him save a little for the future as he cannot find work.
  • Artist

    Logan

    25 yrs old

  • Artist

    Aleyna

    6 yrs old

  • Artist

    Sean

    22 yrs old

  • Artist

    Brooklinn

    11 yrs old

  • Artist

    Jeremy

    21 yrs old

Logan is a 25-year-old young man who is living with Hashimoto's and developmental disabilities, including Apraxia. He enjoys riding his trike, bowling, fishing, playing basketball and helping with his many, many animals. His family likes to consider him challenged not limited, and you can find out more about him through Logan's mom, Allyson, chronicles their lives on her Facebook page, The Crumb Diaries.
Logan's designs are raising money for Logan's Fund, a trust fund set up to be set aside for Logan should anything happen to his parents.    

Aleyna is a cancer warrior who has provided us with the lovable Ladybugs. Her battle through cancer has been aided by PeppedUp! and her artistic creation will keep it full circle with 50% of the proceeds going to help other children in need. Her strength can only be matched by her lovable personality!

This is Sean Bowler. Sean is a twenty-two-year-old young man. Sean loves his family and friends. He shows his appreciation for those that care for him every day.
Sean was born at twenty-seven weeks. As he grew, Sean was not meeting his milestones. It was clear that he would need special education services. During his younger years, we were trying to find a diagnosis for Sean in hopes of better understanding his needs, development, and challenges. At six-years-old, Sean was diagnosed with FG Syndrome. With this diagnosis, our family started to make connections with other families with the same diagnosis. Sean’s geneticist at the time was not fully convinced with the diagnosis and after some time we started another search for a diagnosis. In the spring of 2016, Sean was diagnosed with Xia-Gibbs syndrome through genetic testing. At the time of his diagnosis, Sean was the fifth person with a confirmed diagnosed through genetic testing and the twentieth person overall.
As of his twenty-second birthday, Sean began attending an adult day program at Coastal Connections in Amesbury, Massachusetts. This program serves special needs adults of all ages and abilities. Sean refers to Coastal Connections as his “work.” This wonderful program provides academic and vocational opportunities for clients. Over time, Sean will have the opportunity work out in the community.
At home, Sean has his family. He is the older brother of two sisters whom he adores, Abby and Kelsey. Sean gave himself the nickname, Superman. To his family this seems very appropriate. Sean has recently had his third spinal fusion surgery. Currently, Sean is recuperating from this surgery and anxiously awaits his return to work. Feel free to follow us at https://www.facebook.com/Theboysmb/

Brooklinn is 11 years old and lives in Washington State with her mom, dad and sister. She was born with severe to profound hearing loss. By the time she was 3 years old she had lost all her hearing and received her first cochlear implant. When she was 7 years old she received her second cochlear implant. Brooklinn LOVES to draw, she doesn’t go anywhere without her sketch pad and colored pencils. When she’s not drawing she loves playing volleyball and is active in 4H where she is her club's historian. She shows chickens, cavy, and rabbits. She also does sewing, crafts, photography and wood working. She likes reading Goosebumps books and the Dear America book. She loves unicorns and her favorite movies are The Nightmare Before Christmas and Where the Red Fern Grows. Her favorite holiday is Halloween and she loves hanging out with her family and friends. Something that is very unique about Brooklinn is that she has two different colored eyes. One is blue and one is hazel!

Jeremy began his battle with osteosarcoma in December of 2012. Over the course of 9 months, Jeremy went through treatment of high dose chemotherapy and limb salvage surgery. Prior to his diagnosis Jeremy was a welding apprentice for the city of Tempe, which he can not continue due to his metal implant. Looking for a new career path with a desire to help others dealing with side effects from treatment, he developed a product to hopefully help ease anxiety for chemo and blood transfusion patients. He's very excited to help this cause that is close to his heart!


Flash From the Past

July 02 - July 15

The Art of Autism

Our Vision
To empower and connect individuals within the autism community through participation in the Arts.

Our Mission
To foster independence, self-esteem and artistic expression by participation in The Art of Autism Project.

We do this by:

Supporting artists, musicians and creative writers on the autism spectrum
• Providing a forum for displaying, selling and promoting the art of autistic individuals, including visual and fine artists; poets, video/film content providers, singers, and writers
• Providing regular, quality blog posts, essays and newsworthy stories written by autistic writers and others that inform, enlighten and educate.
• Providing a newsletter of potential opportunities for writers and artists on the spectrum to showcase their work
• Creating merchandise – licensed by us from our pool of AoA artists – that support the monetization of both the artists and AoA’s organizational goals.
• Helping artists, writers, and film makers learn new skills through mentorship and developing their entrepreneurship skills

Raising awareness about autism and the arts
• Raising awareness of the importance of the arts as viable tools for learning, growth and expression; especially for autistic artists and their valuable contributions to the world
• Being guided by principles of respect, honesty, openness and willingness to patiently listen to and address diverse points of views, opinions and beliefs with the purpose of continually advocating for the betterment of autistic lives and the systems that support them.

Strengthening the broader autism community
• Encouraging respectful dialogue among collaborating organizations and participants
• Collaborating with like-minded organizations to educate, inspire, and advocate, through neurodiversity panels, educational events, poetry readings, art exhibits, forums, workshops and other types of events.

Our work is inspired by these Values:
• Participant focused
• Appreciation of diversity
• Committed to our mission
• Celebrating and sharing success
• Collaboration
• Passionate about dignity and respect
• A core belief that access to the Arts should be affordable
• Delivery of high-quality products


Fly Free to Be Me

My name is Mike Roberson and I am a private pilot. One Tuesday in January I was out flying and as I left the airport I glanced over at Vidant Medical Center and thought “we should carry sick children flying”. I continued with my day and just put that thought away. For two days I didn’t think anymore about this idea. Well, Thursday night at 2 am I woke from a solid sleep with only one thing on my mind “taking sick children flying”! So, I listened! The next morning I made three phone calls with the third one connecting me to Kimber Stone with Riley’s Army. After just a few minutes she was just as excited about this as I am.

After several meetings and sharing this idea with almost everybody I came in contact with, we set the stage for our first event at South Oaks Aerodrome in Winterville, NC. I talked with the local EAA chapter and they too shared in my excitement. They immediately offered to provide the planes and the fuel to make this day happen. I left the meeting thinking WOW! We really have a great opportunity to touch the lives of people that are going through a tough season in their life. The children are all battling some type of chronic or critical illness, though we may not be able to heal their sickness, through laughter and fun we can make it less painful for the entire family. As the name implies, Free To Be Me is a day for the children and their siblings to come out and just feel free to be themselves with no restrictions!


The Project Heal

Our Values

EVERYONE DESERVES HEALING
We believe that all people who struggle with food and body should be able to get the support and care that they need to heal, regardless of age, gender identity, race, ability, or financial means.

PATIENTS ARE EXPERTS
We believe that the people best equipped to identify the needs in eating disorder treatment and care are those who have direct experience of these systems, and we are committed to seeking guidance from patients and families in developing our programs and strategy.

LISTENING TO THE LOCALS
We believe that every community is unique, and that local communities have the power to identify and meet their own needs. We are committed to supporting local leaders in developing adaptive strategies that respond to the unique needs of their communities.

EVALUATION MAKES US SMARTER
We believe that our work should be informed by the latest research, and we are committed to creating and rigorously evaluating programs, and to shifting gears when a better strategy presents itself.


Cloud Covered Streets

Cloud Covered Streets is the brainchild of Paper Clouds Apparel founder and CEO, Robert Thornton. The mission and goal is to reach out to those most in need and help them with clothing, toiletries, understanding, and hope. What started as a personal mission in Phoenix, AZ has blossomed and we have street teams in Austin, TX and San Diego, CA. Currently, the goal for Cloud Covered Streets at the moment is to continue bringing in street teams and we are raising money for a mobile shower and laundry trailer. As we have been meeting more and more of the homeless, we want to be able to do more for each of them. They have told us how difficult it can be to shower regularly. We want to expand further than clean shirts and toiletry gifts into helping the homeless we encounter to feel normal again. No one is born homeless and we believe that providing a mobile shower facility with a washer and dryer will help every person we encounter to feel a little more hope inside. Please help us reach this goal so that we can make this dream a reality!


Team Logan

As some of you know, Logan was recently diagnosed with a thyroid disorder. Medication is now a part of his daily life, and exercise is going to be a huge part of our routine moving forward. We are lucky enough to have an empty space in our home that we will be converting into Logan's fitness room, and it will be customized to his needs, likes and limitations. He has spinal issues, and therefore will be working with some specialists to make sure everything is perfectly geared toward his health and safety.

So we have brought Logan's Slombie design back out to help him with his needs. Half of the proceeds will go directly towards his medical bills and help him save a little for the future as he cannot find work.


Thank you so much for your support and I hope you enjoy your new "swag".
  • Artist

    Logan

    25 yrs old

  • Artist

    Justin

    38 yrs old

  • Artist

    Simi Fromen

  • Artist

    Tommy

    6 yrs old

  • Artist

    Tim Sharp

Logan is a 25-year-old young man who is living with Hashimoto's and developmental disabilities, including Apraxia. He enjoys riding his trike, bowling, fishing, playing basketball and helping with his many, many animals. His family likes to consider him challenged not limited, and you can find out more about him through Logan's mom, Allyson, chronicles their lives on her Facebook page, The Crumb Diaries.
Logan's designs are raising money for Logan's Fund, a trust fund set up to be set aside for Logan should anything happen to his parents.    

Justin is 38 years old and works at a wood shop in a supported vocational program in Tucson, Arizona.  Justin loves to exercise, draw pictures, listen to music, and anything fireman related.  He is close with his family (especially his uncles!) and enjoys spending time with them while rock climbing and canoeing.  Justin has a dog, Koty, and two cats, Jacob Marley and Jordin Sparks.  Justin has a diagnosis of Down Syndrome with Autism Spectrum Disorder but his disability certainly does not define him!!

Simi Fromen is a writer and poet. When she was a young child, she wrote poetry and stories as an exploration of the arts and to unleash her creativity. Many years later, she picked up the pen again finding healing and her voice through words. Her work has been featured in online magazines. Her love and passion for spilling ink have gained her a devoted online following. Her first book Ascending Voice is now out and available on Amazon in the link below. She is currently working on her next inspirational book and novel.

Tommy is six years old and he is much like any other six year old. He loves cars, trucks, trains and planes and he loves to play outside. Although he is much like any six year old boy, he is also very different. He was born with 22q11.2DS – 22q for short. 22q is a partial deletion of the 22 chromosome and it affects every carrier differently with a wide range of symptoms.
In Tommy’s case, he was affected with a heart defect, a cleft lip & palate, a laryngeal web as well as low muscle tone and developmental delays. He has been tube fed the majority of his life and he’s slowly learning how to eat on his own. Because of his many challenges, he has a very busy schedule. He has been receiving therapies multiple times a week since birth and he has had five surgeries to date. He currently goes to developmental school every weekday. In addition, he receives 3-4 therapies a week at home after school. He is very busy, but he continues to work hard like the super hero he is.
Although he has so much on his plate, Tommy is one of the happiest and easiest going kids I have ever met. He loves the movie Wall-E and his favorite past time is playing with his planes. He loves to snuggle and his best friend is his four year old sister, Rosemary. Tommy has a special way of making people in his life happy and he is truly an inspiration to everyone he meets.

Tim Sharp is an Australian artist who has been diagnosed with autism and is most famous for his creation of the colorful super hero Laser Beak Man. In 2010, Sharp's work garnered international attention when Laser Beak Man was turned into an eight episode animated television series screening in Australia on ABC3 TV and it was then sold to Cartoon Network Australia, New Zealand and Asia – a world first for a young man with autism to achieve.


Special Olympics Florida – Duval County

June 18 - July 01

The mission of Special Olympics Florida is to provide year-round sports training and competition in a variety of Olympic-type sports for people with intellectual disabilities who wish to participate, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in the sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.

The ultimate objective of Special Olympics Florida is to help people with intellectual disabilities participate as productive and respected members of society at large, by offering them a fair opportunity to develop and demonstrate their skills and talents through sports training and competition, and by increasing the public’s awareness of their capabilities and needs.

Special Olympics Florida, Inc. is a 501(c)(3) charitable organization.

Population Served:


Special Olympics Florida serves over 44,400 athletes and offers training and competition in a variety of team and individual sports, with the help of over 31,000 dedicated coaches and volunteers statewide.

Special Olympics athletes are given opportunities to participate without regard to economic, demographic, religious, or social factors. Neither athletes nor parents are charged a fee to participate in the program, and activities exist for those of all ability levels, from the highly functioning to the severely challenged. Anyone can participate in Special Olympics if they meet the eligibility criteria of having intellectual disabilities or a similar developmental disability.

Intellectual disability does not discriminate. Athletes who participate in Special Olympics come in all ages, ethnicities, and economic and social backgrounds. However, a significant number of athletes live in urban areas and come from lower socioeconomic groups. In addition, the vast majority of school-aged children with intellectual disabilities who attend public schools receive free or reduced lunch, placing them in the at-risk demographic.
https://specialolympicsflorida.org/duval/
  • Artist

    Caleb

    11 yrs old

Caleb Prewitt is eleven years old, born and raised in Jacksonville FL. We were surprised at birth with his Down syndrome diagnosis, but wouldn't change a thing now. He has a sister, a step-brother and step-sister who are all much older! Caleb is a student, athlete and advocate! He will "graduate" this week from Elementary school and head to Intermediate classes in the fall. Caleb has made trips to advocate for himself and others to both our state and national capitols. He loves to meet new people and loves to travel too. He and his dad enjoy working together in the kitchen and will soon hit the stage with a "Cooking with Caleb" event this fall here in Jacksonville with the Southern Women's Show. He's done some modeling, and is a Brand Representative for Jonas Paul Eyewear and JakeMax Apparel. He is also an ambassador for both AbleFinder and SaveDownSyndrome. He loves sports and participates in eight Special Olympics sports throughout the year, as well as Challenger League baseball and TOPSsoccer. We began participating with Special Olympics when he was just four with their Young Athlete's Program, which gave him the tools for the sports-side when he turned eight. His favorite sport is Bowling, followed by Equestrian. We are excited to help raise some funds for our local SOFL program with this partnership with Paperclouds Apparel!


Focus on Lyme

June 04 - June 17

OUR MISSION

Focus On Lyme was started to improve diagnostics, treatment, prevention and advocacy for patients suffering from Lyme and associated tick-borne diseases. Many stories of Lyme disease are similar with misdiagnosis and lack of proper treatment options while debilitating symptoms worsen. Many physicians simply do not believe in a Lyme diagnosis and patients are forced to pay out-of-pocket for treatments and medication, not knowing if they are helping or hurting. Even after patients are feeling better, they are unsure if they are healed or in remission.

The typical Lyme patient cannot afford to travel cross country to seek out care from a Lyme specialist. Nor the out-of-pocket costs associated with IV antibiotics and cash pay office visits. Many patients are so ill and tired they cannot advocate for themselves in an insurance system that does not recognize their condition.

Focus On Lyme was created to help all Lyme patients by making effective change within the diagnosis and management of this disease so patients maintain a quality of life.

Focus On Lyme was started to improve diagnostics, treatment, prevention and advocacy for patients suffering from Lyme and associated tick-borne diseases.

The typical Lyme patient cannot afford to travel cross country to seek out care from a Lyme specialist. Nor the out-of-pocket costs associated with IV antibiotics and cash pay office visits. Many patients are so ill and tired they cannot advocate for themselves in an insurance system that does not recognize their condition.

Focus On Lyme was created to help all Lyme patients by making effective change within the diagnosis and management of this disease so patients maintain a quality of life.

Many stories of Lyme disease are similar with misdiagnosis and lack of proper treatment options while debilitating symptoms worsen. Many physicians simply do not believe in a Lyme diagnosis and patients are forced to pay out-of-pocket for treatments and medication, not knowing if they are helping or hurting. Even after patients are feeling better, they are unsure if they are healed or in remission.

Focus On Lyme is taking a systematic approach to Lyme disease and attacking each issue one step at a time.

 

Focus On Lyme has partnered with TGen scientists Paul Keim, Ph.D. and David Engelthaler, Ph.D., to create a next generation DNA sequencing test. Paul and his team have world renowned success coupled with state of the art technology to create an assay more accurate and specific with the goal of changing Lyme diagnostics.

We are bringing the best and brightest inside and outside of Lyme to solve this issue.

We have the world’s best researchers in the biological sciences working on our diagnostic tool. They manage global outbreaks of disease and find answers in the middle of the outbreaks.

We have a super power with a proven track record of success in TGen.

We have a dedicated advisory board and fund raising efforts that will effect every area of Lyme.

Lyme is the number one reported infectious disease to the CDC with over 300,000 reported cases last year. The diagnostic tests that exist today are flawed, meaning the actual number of Lyme cases is much higher. Antibody based-only test is 30-50% accurate. PCR test is only 62% accurate. This is not much better than a coin toss and we can do better.

https://www.focusonlyme.org
  • Artist

    Sebastien

Sebastien Millon is an artist. His work is noted for its lack of vision and his art is usually muddled in a turbid stew of crockery. Many artists, art critics, and frankly most of the public views his work with great disdain and disrespects everything he is about (no one actually even knows what he is about, including the artist himself). Sebastien also has a blog, the following is an excerpt:  

Health History

Some of these posts are going to be incredibly self-indulgent. Talking about my health journey, my pain, my ...., my .... Part of it is, I think it will be cathartic for me. Plus I've been in such scary place with pain, that it is helpful writing about it and sharing. Maybe it helps me psychologically feel less scared, less alone. Maybe it gives me the illusion that I'm figuring things out. A bit of my health history, and how I contextualize my health situation: Pre-2005 Since I was a child, I'd had a variety of low level symptoms and weird things, but I could never quite put my finger on what was up. I was often times feeling uncomfortable or on edge inside my body. I also had quite a bit of insomnia, anxiety, lymph node discomfort, general body discomfort, vision headaches, very rarely sharp explosive pain in back of head, blurred vision issues, periods of manic energy and then total lethargy, concentration issues. These symptoms would all wax and wane in similar sequences together. At the time I chalked it up to my body's genetics and my particular personality and attempted to dismiss some of these things as "normal." Many of these symptoms I could mask, so no one around me had any idea that I was having any issues. Heck, I couldn't even describe most of those symptoms at the time, they were so vague and ebbed and flowed into each other. And even if the symptoms did worry me I was able to function at high levels, play a lot of sports, do high level academics, etc. I wasn't clairvoyant, but as the years dragged on I had an inkling that something was really wrong. It was like waiting for the other shoe to drop. I had no idea what form or shape it would take, but a sense of dread and fear began to permeate my youth. The symptoms seemed to be creeping on me, gradually becoming stronger, more noticeable to me. I'd always pushed myself intellectually and physically, I prided myself on that. I loved working hard and seeing what my body and mind were capable of, how much I could improve at things if I set my mind to it. I was blessed with a lot of opportunities, and I wasn't going to let them go to waste, regardless of what underlying thing was going on with my body. But once I got to college, I felt like I'd lost all my natural energy. I was losing my ability to pursue projects, maintain concentration, execute critical thinking like I once had been able to. This wasn't normal for an 18-19 year old. A deep exhaustion settled over my body. I started self medicating by drinking a lot of coffee, this would temporarily mask my issues but would aggravate certain things like my anxiety and ability to sleep. And obviously, with a thing like coffee, you are always needing to up the ante, increase dosage to chase those elusive energy levels. Sometimes I'd try to chalk up my issues to the stress of life, stress of college, etc. I hoped and wished stress were the be all end all, it seemed to affect a lot of people and I secretly hoped it was my main issue. Or maybe I was depressed or had underlying anxiety issues? except, I tended to have a very happy go lucky disposition, but my health was beginning to darken the clouds, for sure. Late 2005- At 23 years old, the other shoe finally drops. It dropped pretty damn far and hard. I fall ill with what seems to be the flu. Except this is no normal flu, my body seems to endlessly spiral into a hole of fatigue and pain, and I can't recover. I'm smothered by fatigue and pain. The fatigue seeps down to my bones. I had never ever been this tired. Symptoms I'd previously described from my youth all blow up in severity  (which is what leads me to believe I first contracted my underlying disease in childhood, basically the disease just lurked in the background for years). The pain in the back of my head and lymph nodes behind my ears is terrible and constant. I can't really even describe what was going on to doctors, my pain, fatigue, symptoms are all so overwhelming, and hard to pin down, they are constantly shifting like light in a prism. 2006- After many many many months of searching and testing in vain, the doctors (saw too many to count) eventually come to the conclusion that I had suffered mono and was now labeled with Chronic Fatigue Syndrome/Post Viral Fatigue. In hindsight, I now realize/theorize that mononucleosis was a trigger. It unleashed the underlying condition I'd had since I was a child, and if mono hadn't been the trigger, eventually some other trigger event would have taken place. Like I alluded to, I feel like my body's health had been slowly decaying over the years, the foundation was rotting, and it was being primed for a cataclysmic event. Mono was not the ultimate cause of my current situation, it was merely the surface trigger, and for many years we went with the wrong assumption that mono/chronic ebv was at the root of my issues. I ran into further complications, as one of the tests that was run in an effort to narrow down my diagnosis was a spinal tap. It ended up triggering even worse symptoms, burning neuropathy and burning head pain. I spent 6-12 months recovering from this pain, purely trying to survive the pain hour by hour,  day by day. It was the hardest period of my life (until now!). 2009- Having exhausted myself seeing doctors and never getting any progress, my family and I are recommended a doctor that one of our family friends (also a doctor) had met at a conference. Grudgingly I go see this doctor (I've lost all faith at this point of true help for my condition). This doctor specializes in research, namely looking at pathogenic etiology of chronic health issues like fibromyalgia and chronic fatigue. After some pcr dna lab testing, I'm given the first clue as to what might be going on: the lab work indicates I have a protozoa called protomyxzoa rheumatica (it had no name at the time). Obviously I'm skeptical of this information but am also excited. This is the only lead I've had in 3 freakin' years! I also have no idea to what degree this particular thing could be causing symptoms. And why, after seeing a billion other doctors, has no one found this thing?! But hope reigns eternal, and at this point after 3 years of chronic pain/being bedridden I'm willing to try things that are within the realm of logic, even if they go against conventional wisdom. This doctor actually has a treatment: antibiotics! My mother and I had long wondered whether lyme or a lyme like illness had been behind my health issues. My symptom make-up certainly fit the bill, and the results of my Western Blot were indicative of lyme, but not conclusive. A naturopath I'd seen early on thought I should explore and retest for lyme, but the test is expensive, so I ran this idea by my doctors and they all nixed the possibility of lyme. I did not pursue further lyme testing. I also assumed lyme had an immediate onset after exposure, plus I assumed all lyme cases present with the bulls-eye rash. Given my lack of exposure at 23 to ticks, lack of rash, lack of arthritic symptoms, I was also skeptical of lyme. But discounting lyme, and other infections was a bit of a mistake on my part, as with many of these pathogens, lyme can lay dormant or lowly symptomatic for years. And lyme, and its variety of strains, do not always present with the classic bulls-eye rash, and certain strains of lyme present not with arthritic symptoms, but manifest with more neurological symptoms like the ones I experience. I did not know any of this. Nor could I research any of this as I was too sick. Anyhow, this new doctor puts me on an antibiotic, and lo and behold I end up herxing (herxheimer is a die off reaction, where after taking an antimicrobial one has a flare-up of their usual symptoms, and sometimes new symptoms. Can be hard to distinguish from an allergic reaction. It's hard to say exactly if a herxheimer is a reaction to toxin release from dying pathogen or due to increased immune response. Or both.). Herxing is often a good indication that there is an underlying chronic bacterial/protozoal pathogen. I make improvements, but I have to introduce the antibiotic slowly due to the herxing. Slowly and gradually over the period of about 6-12 months I see improvements, I'm no longer bedridden, constantly needing to ice the back of my head. I still have my core symptoms but they are less acute.  This doctor also recommends a particular diet, mostly plant based, low fat, which turns out to be very helpful. I get a reprieve from constant smothering pain and tomblike fatigue. So while still always in pain, body discomfort, I have more energy to think of other things like... DRAWING! 2009-2014 I continue on this mono-therapy. I survive, and make do with what health I have, but it is very limiting. I still can't exercise without engendering massive flare-ups in my pain and symptoms. Going out and hanging with friends is still very hard. I concentrate on drawing when I can, it is hard, it takes everything I have. I can draw fun simple things, but the more complex, longer projects are hard to plan and execute. The best way I can liken it is that my body always feels uncomfortable to some degree, and that my mind always feels like it's on a ship deck in a roiling sea, slipping and sliding about and never able to find its footing. I still have to expend a lot of energy to compartmentalize pain and fatigue. Usually mornings are when I have some energy, afternoons I'm shot, but the pain and discomfort are always there to some degree. There is a wax wane to my symptoms that I can't ever put my finger on, but there certainly is some sort of a pattern to how the symptoms increase and decrease in intensity. I don't know what other treatments there are for this, but I find a certain rhythm to life. A simple rhythm. I suffer, but nothing like before. I make peace with my situation. 2014- At this point I'm starting to burn out with my status quo. I can't put in the hours and focus to improve and develop my drawing. If there is one thing I value, it's being able to grow, having the ability to push one's limits. But I'm also getting tired of the pain and being so trapped in and by my body. A couple things happen. I finally learn the name of the illness I've been diagnosed with (the organism hadn't been named until this point). Armed with the name, protomyxzoa rheumatica, I start researching and coming across other patients online. I learn that there is a much wider array of therapies available, and that mono-therapy with one abx it is usually not possible to recover, especially in cases as severe as my own. What I come to understand is the abx I was on brought me along, but I had plateaued and further treatment would be necessary to improve. Often times protomyxzoa is not the only infection at work, therefore considering lyme/coinfections is not a bad idea, especially given my response to abx and my previous WB testing. One problem is that the testing for lyme/coinfections is not very good. In fact it is ridiculously weak and inaccurate and the big kicker is that these tests are mistakenly used to offer a definitive negative diagnosis to patients with high likelihood of these diseases. There are a wide variety of strains for borrelia, bartonella, babesia, and a whole host of other bacteria and viruses that could be working in conjunction with this protozoa. Our testing does not test for a wide variety of these strains, we cast a small net, and since it is antibody based testing, well that is very iffy given the fact that borrelia is expert at hiding itself from the immune system. I presume some of the coinfections are hard to detect as well, but I'm not as well versed on their ability to hide from the immune system. I think it is safe to assume it could play a role and thus devalues the antibody tests. We have much to learn in the realm of these infections, we are scratching the surface, and it will take time before we can begin to understand which strains are actually present, which strains are pathogenic, and then untangle the facts to understand which particular infection is causing specific symptoms and chronic illness. This is usually why a broad spectrum antimicrobial approach is best in treatments for these chronic infectious diseases, you need to try and cover your bases. An important question is why some people can harbor these infections and not get sick, while in other people it triggers unrelenting chronic illness. There is a good chance that some immune system issues are at play, and possibly with the right mix and amount of infections the immune system hits an inflection point where it can no longer keep a lid on things. We still don't know a lot of the mechanics behind what is going on in these chronic illnesses, but places like Stanford are pursuing and asking the right questions in my opinion (http://med.stanford.edu/chronicfatiguesyndrome.html). But I'll tell you one thing, I'm not going to wait around decades to have the research tell me what is going on to confirm things. I've lost a decade already to this health issue, and I have a basic ballpark understanding as to what is going on in my body. Can I tell you the exact infections at play and which ones are causing what symptoms? Nope. But I can tell you antimicrobial therapy is the only thing that has ever helped improve my situation. It's tough and difficult therapy for me, but given the pain I've gone through, and the rocky situation I'm currently in from the crash, it's still completely worth it and I regret nothing. I fully plan on continuing antimicrobial treatments (albeit in a very conservative manner) plus supportive therapies. Back to my story. Realizing I'm leaving health on the table, and desiring to pursue a grander treatment strategy, I go talk to my doctor, and he adds an anti-malarial medication. It is very effective, but my big problem is the nature of my herxing. It is constant. I introduce the med slowly, and over months, while I'm still exhausted and unable to work, I can tell it is reducing the swelling and pain in my lymph nodes over time. But the symptoms it flares up, especially the fatigue and increased pain becomes exhausting. There is a particular symptom that is very hard, where you feel wide awake but completely exhausted, and yet you can't sleep. I've read enough about these infections to find out that there is phrase for this, as it is a common enough symptom with these illnesses: wired-tired. Describes it perfectly. I also start introducing a variety of detox methods to try and control and manage die off, and also some herbal antimicrobials. But eventually I burn out, and in 2015 I start on a therapy that is only dosed twice weekly, but very effective and powerful. I finally start being able to leave the house more, but the herxing still messes up my concentration and focus. The herxing also gives my body a manic energy, I feel like a coke bottle that's been shaken and ready to explode. My sleep is messed up too. But wow, I'm amazed that my lymph nodes in behind/under my ears are so much better from a year ago, still painful, but so much reduced in swelling. I believe that the size of swelling in my lymph nodes is indicative of the toxin/pathogen load, and that over time, as the pathogen burden is reduced through antimicrobials, the amount of swelling in the lymph nodes also decreases. To me, my lymph nodes are a marker that indicate the level of the pathogen burden. It takes many months to see improvements, but they happen slowly through persistent treatment. By the summer, confident I'm feeling better, getting closer to remission, and more impatient than ever to see the end of this thing, these 10 years of hell, of being trapped in my body... I see another doctor.  I tend to agree with his philosophy, to hit these pathogens in the body's various systems you need a wide array of meds, plus this way you can cover your bases and hit other unknown pathogens that may be of issue. He puts me on more aggressive treatments, multiple abx and multiple herbs. I have this therapy vetted by multiple doctors who agree it is a good treatment, thorough, and that my health history warrants these treatments, as all indications point to a systemic infectious disease cause for my illness. It feels good to be coming across multiple doctors finally giving credence to my issues, recognizing there is something going on here beyond psycho-somatic or post viral issues. There is a serious active infection(s) that somehow needs to be gotten under control. In fact, meeting these different doctors who validated my experience, well it made me want to cry. I finally felt like I was getting help from multiple doctors who believed in my case and my experience, and who understand the depth of how disabled and debilitated I've been from this thing. I love doctors, but most mainstream doctors can't get past the fact that I look so healthy, they can't understand that something can be crushing my life with constant pain and fatigue if it doesn't show up on standard tests and I look so good (thank you very much ;). The patient experience is devalued in favor of lab work they don't even always understand! I don't fault them for it, they don't have time to stay up on all these weird ass chronic illness infections plus the research is still developing, not to mention the unfortunate controversies surrounding lyme/coinfections. This is why the psychological component gets examined and usually the doctors will run with that, it is the easiest answer to a complicated situation. As I like to say, my psychology has been affected by my 10 years of pain and fatigue, but it is not the root cause of my issues. The doctors whom I do have a bit more of an issue with are infectious disease doctors. I've met some wonderful ones, but on average, they are extremely dogmatic in their approach to cases like mine. Chronic lyme, chronic infectious disease syndrome? total bullshit in their eyes. They have a term for patients like me: crazy. That's it. Frankly, if I'd become a doctor, I have no doubt that I'd look at a case like mine and think the exact same thing. I'd probably just feel sorry for this young, but healthy looking man who must have serious psychological issues that he keeps coming to bug doctors proclaiming he has these mysterious and hard to identify infections. But for me, as with many similar patients to me, there are too many things pointing to an underlying pathogen as a cause for our issues. My biggest problem with the infectious disease doctors is the amount of disrespect they show to patients like me. They are completely unwilling to look and think outside the current status quo, they dismiss us out of hand, even as the literature is growing legitimizing cases like my own. Sadly, within medicine, changes can take a generation or two, even after the science has proven a new paradigm. Also, there are the mechanics of $ at play, and this can be a huge factor in how medicine is practiced, how resources are distributed, and what access patients can get to medicine. If our infections are legitimized, then we will have to open the floodgates to a hell of a lot of longterm antibiotic use. This is a dangerous proposition, and maybe this is part of the fear for infectious disease doctors. But that is no excuse to deny the existence of our cases and the strong possibility that multi-systemic infections are at the core of our issues. And if their main concern is the overuse of antibiotics I'd recommend they call for a ban of the sale of abx for use in our livestock. 80% of abx are sold to that industry and many issues of resistance arise from their use in this context. Not to mention compounding factors like influential infectious disease doctors and their ties to insurance companies and IP issues that end up muddying the waters as well. It gets rather convoluted, but agendas are not as always geared towards the patient and public health as one might initially suppose and hope. Back to my story. For a while, I'm doing ok on these new aggressive therapies. I mean, I'm herxing like crazy, pain in head, lymph nodes, fatigue, insomnia, but I am surviving. The doctor tells me to push through, but then, after about a month, I start feeling like my body has gone haywire. The pain in my head takes on the nature of a constant explosion. I'm getting burning neuropathy, and just wish I could jump out of my body. I have to stop all therapy as this is a hell I cannot endure. But there is a problem. After a normal herx, the pain subsides within a few days-week after stopping therapy. Here, I have unleashed something so deep, nasty, unrelenting. So this is where I'm at. I've been off all treatments for 4 and a half months. I have been inching back to my baseline, but the pain has been hell. Very similar to what I went through after the spinal tap. It is the most draining pain in the world for me, it grips me, in the back of the head, it is a burning that puts my whole body on edge and holds me hostage. This kind of pain really sucks, it reduces me to a child, scared and impotent, seeking solace and refuge anywhere I can, because I cannot find it within my body. A few months ago, the pain was 10 times worse, the burning neuropathy was killing me and I couldn't sleep. But I'm still struggling to survive the days, some days the burning gripping pain lets go, and I can breathe and think of other things. It is going to be like this for a while, the pain waxes and wanes, and eventually it will dissipate into a more manageable kind of pain. But trying any antimicrobial, even baby doses of things I'd handled fine before just unleashes things even worse. It is frustrating and scary to be off meds for so long. But I have to listen to my body. It is giving me no other options right now. Psychologically, physically, mentally, pain is punishing. And this pain, is a kind of end of the world pain, it is in my head, and it seizes me so hard and it won't let go. It really does hold me hostage and when it lasts days on end it feels endless and hopeless. I could never have believed such pain existed. I know I will overcome it, I will be able to resume treatments. But it is a long game, I'm having to be patient, smart, and careful. But I have to admit, I am very scared. The pain puts me in a place of great fear and exhaustion. Sometimes I don't know how I'm going to survive it. It is completely destabilizing and makes my body feel out of control and unmanageable. The new doctor I'm seeing, whom I just saw the other day, has said some patients do crash like I did.  That's what my original doc who dx'd the protozoa also said. They both say the protozoal infections can be some of the most brutal, in terms of pain and herxing, especially if there are multiple infections involved. Part of me is really angry. In hindsight, this new doctor I was seeing really pushed me to ramp up on too many meds too quickly, and he put a lot of pressure on me in spite of the concerns that I voiced. And yet, I'm even more angry at myself for not having been more careful, not having trusted my gut, I got carried away with the illusion that maybe I was in the final stretch run and I could handle such treatment to finish off this thing. Basically, I got impatient (after 10 years of hell who wouldn't be!), and I am most truly paying the price with this epic crash. But I had no idea this kind of setback was even possible, so I have to rein in my frustrations, and focus my energies on trying to regain my baseline and surviving this struggle. But I realize that I always have to trust myself, be smart, be careful, go slow. In the end, the ideal situation would be to be find a doctor who has at least 10 years experience treating cases like my own. Sometimes I wish I had more options for pain relief. But given the nature of my pain, I know that pain killers are a very dangerous path, and that would open a pandora's box that I cannot deal with. I cannot afford to add another problem to my health woes, and my intuition is that if I get on the pain killer bandwagon, I'm going to be in big trouble. They might be effective temporarily, but eventually their effectiveness will wane and I will be left with a serious dependency issue. So I have to manage my pain as best I can. I do a lot of heat therapy, including baths, dry sauna. For some reason these things give me a bit of relief from my body. The other psychologically difficult thing is worrying about not being on treatments for so long. I worry about the underlying illness progressing and I know my doctors worry about this too. Especially given the fact that there is a strong possibility these sorts of infections play a role in a multitude of neuro-degenerative diseases. That's what makes me scared and impatient, the worry of not treating and being held back by my body eats away at me. Ultimately, I have to look at the cost/benefit, and right now, the cost of not treating is not ideal but it is my only option, as the benefit of stabilizing my body is far superior to resuming treatments and spiraling my body back into a hole of pain I cannot manage. I'm so grateful to have my family. Without them I would be toast. I am loved, and have emotional, financial, loving support. I always prided myself on trying to be independent, and it has been very humbling to have to need and ask for so much help. To admit one's weakness is a difficult thing. To admit one's fears, how scared one is, that is also difficult, and my family kindly listens and helps me through my tribulations. I wish I could be doing more for my family, and not having to suck up their emotional and financial resources. At this stage in my life, I should be the one helping my parents, not the other way around. I do believe I can get better. Obviously I sent my body into a tailspin, and I need to recover and then resume treatments and try to go for incremental improvements. There is no fast way around this for me. I wish I had clearer answers, a clearer treatment path. When the pain is gripping for days, weeks on end, I start getting so scared, unrelenting pain begins to break me down. And on the days where that pain has tempered, I feel stronger, more hopeful, and I feel a bit more like things aren't spinning out of control. I know I will keep on my journey of healing. Do I know the exact path? do I know the exact endgame? no and no. But I know I can improve and I have to focus on that. I have improved things via antimicrobials but have had to go slowly and carefully, so hopefully I can resume that tact and keep recovering my health slowly. I never thought this would be my path. But in a sad way, getting better from this thing has become my life's work. I hope I can learn from it, and I hope I can keep finding the light and find ways to transcend this thing. But in the difficult moments, and when I'm in pain, I repeat a phrase a buddy of mine suggested: "May God grant me the strength to make it through the day." I like it.


Madeline Stuart & Global Down Syndrome Foundation

May 21 - June 03

Madeline Stuart

Madeline Stuart is a 22-year-old model from Brisbane, Australia most notably dubbed by the press as “the world’s most famous super model with Down syndrome”. This incredibly courageous, beautiful, and talented young woman has had astonishing success in the short time she has been modelling, and has captured media attention internationally.

With three simple words – “Mum, me model” – Madeline changed not only her own life but the lives of so many people with big dreams who didn’t fit the mold. It was late 2014 when Rosanne, Madeline’s mum, took her to a fashion parade where Madeline’s passion was born. With a wilful spirit and defined goal, Madeline continued on her fitness regime to address her weight, a struggle for most people with Downs syndrome.

Inspired and undoubtedly proud, Rosanne photo-documented her daughters journey. “It will take a lot of work and dedication but if you want to commit to this journey, I’m with you,” Rosanne told Madeline.

After losing 20kg, a massive amount for anyone, Rosanne posted before and after shots of Madeline online not only to show the dramatic results but also to encourage others. She knew Madeline’s story would resonate with people around the world. She wasn’t wrong.

Almost overnight, the post went viral. Madeline’s social media numbers grew, the photo was viewed over 6.8 million times and she began to hit global headlines with publications in Iceland, Germany, the US, Australia, Mexico, Cuba and the UK picking up her story.

Modelling offers followed soon after from big fashion labels and non-profits and it wasn’t long before she received her first offer to grace the runway in New York. Since then, Madeline hasn’t looked back.

Madeline has modelled in countless fashion shows including 5 seasons of New York Fashion Week, Runway Dubia, Caspian Fashion Week Russia and Mercedes Benz Fashion Week China, PFW, LFW and many more. She has been featured in prominent, international publications including Vogue, New York Times, Forbes and Ella also endorsing products including JBronze by Jennifer Hawkins, Weetbix, VP Wow and Flat Tummy Tea.

It is also important to Madeline to support those that support others. As such she supports a number of charities and non-profits including Multi Cap Foundation, Endeavour Foundation Australia, Silver Linings Project, Vets Intl, The DisABILITY Museum, The Carol Galvin Foundation, Kulture City, FUB Sweden, ‘ Inside Outside Dance, Buddy Walk NYC, the Special Olympics of New York and of course her favourite charity The Global Down Syndrome.

In 2015 Madeline was awarded the prestigious Model of the Year Award at international fashion show Melange in San Francisco, nominated for Pride of Australia and Young Australian of the Year Award for 2015 and 2016, named model of the year for 2016 by World Fashion Media, was awarded the advocacy award for her work in Uganda from Kulture City and received the Quincy Jones exceptional Advocacy award from Global Down syndrome in 2017. All of this while managing her Brisbane dance school ‘InsideOutside Dance’, participating in Special Olympic Games and launching her 21 Reasons Why by Madeline Stuart fashion label, a fashionably casual chic RTW line. For the last 2 years her journey has also been captured by B-Reel Productions for a documentary to be released in late 2018. Yet to date one of her proudest moments was getting her 01 Working Visa for the USA making her the only person in history with an intellectual disability to do this. Not bad for someone only 3 years into building what has become an enviable career.

Madeline has a great sense of humour and a contagious smile. Not content with simply making a career, she continues a hectic touring schedule spreading the important messages of diversity, inclusion and acceptance. She exudes confidence and her warm and friendly nature endears her to even the hardest of crowds. She shares her story with the hopes of inspiring, encouraging and educating others, proudly changing society’s perception of people with disabilities one photo shoot at a time.


Global Down Syndrome Foundation's Mission, Vision and Values

Mission:
Significantly improve the lives of people with Down syndrome through research, medical care, education and advocacy.

Support the Linda Crnic Institute for Down Syndrome to eradicate the medical and cognitive ill effects associated with Down syndrome.

Vision:
Educate government organizations and society, and change legislation so that every person with Down syndrome:

-is protected against discrimination
-has access to evidence-based educational programs
-enjoys a comparable, fair share of funding from the Federal Government for research, medical care and educational programming
-is a valued member of society
-has access to evidence-based medical care
-has the opportunity to have a job and earn a decent wage without being disqualified for health benefits
-is able to reach their potential and lead a dignified, full and productive life
https://www.globaldownsyndrome.org/
  • Artist

    Madeline Stuart

    22 yrs old

Madeline is a unique 22-year-old model from Brisbane, Australia. Madeline notably, has been dubbed by the press not only a Super Model, but "the world's most famous model with Down Syndrome." This incredibly courageous, beautiful, and talented young woman has had astonishing success in the short time she has been modelling, and has captured media attention both in Australia and internationally. As with many people with Down Syndrome, Madeline struggled with her weight for a long time, and in early 2015 she decided to get healthy and chase after her dreams which included dance. She lost over 20kg, and is now changing society's perception of people with disabilities, one photo shoot at a time.

Madeline's career started when Maddy attended a Fashion Parade in late 2015 with her mum and said to her, "mum me model". Rosanne (Madeline's Mum) knew it would take a lot of work and dedication, and told Madeline if she wanted to commit to the journey, she would fully support her.

After Madeline lost a few more kilos of weight, Rosanne created social media accounts and posted a "before and after" photo online to show the results and to encourage others. Rosanne was very confident that the story Madeline had to share with the world would travel around the globe, long before it actually hit the internet. Just as predicted, the photo went viral. Instantly, overnight - Maddy's social media numbers grew over 100 Thousand, and within a few days Madeline's photo had been viewed over 6.8 Million times. Over the next few days Madeline hit headlines all over the globe with publications from Iceland, Germany, the US, Australia, Mexico, Cuba, and the UK; nearly everywhere in the world had picked up the story.

Madeline has modeled in New York Fashion Week, Art Hearts Fashion Week, Style Fashion Week, Melange Fashion Week, Caspian Fashion, Runway Dubai, Mercedes Benz Fashion Week China, Paris Fashion Week, London Fashion Week, and dozens of others globally. Madeline supports dozens of Non Profits some of which she has made special appearances at, performed a professional dance routine, or modeled in their fundraising Fashion Shows. Such charities include: Multi Cap Foundation, Endeavour Foundation Australia, Silver Linings Project, Vets Intl, The DisABILITY Museum, Melbourne City Mission, The Carol Galvin Foundation, Kulture City, Embrace Kulture, FUB Sweden, Inside Outside Dance Ensemble, Buddy Walk NYC, Horizon Stars - The ARC of the Emerald Coast, Special Olympics of New York, Cultural Device Project and Radical Beauty Project, among many others.


Flash Campaign

May 07 - May 20

Our next campaign is a mix of people and we are calling it our Flash Campaign because we got the art so quick and planned the project less than two weeks ago. This campaign we will be raising money for The Odd Cat Sanctuary, Firefighters vs. Autism, Camp CaPella, Beyond Autism, and Brooklinn.

The Odd Cat Sanctuary

The mission of the Odd Cat Sanctuary is to help odd cats who have no place to turn. This may be a result of medical illnesses, behavioral issues, being physically challenged, abandoned, abused, or neglected, feral or semi-feral, death row inmates, or seniors. We believe that all cats deserve love, attention, and medical care, first with a caring foster and then with placement in a forever home. We are a 501(c)(3) organization that is primarily foster based, volunteer driven, and relies on donations, contributions, and fund raising.

Firefighers vs. Autism

Firefighters vs. Autism was organized exclusively to educate the community about the dangers of wandering and drowning that are prevalent among those within the Autism Spectrum Disorder (ASD). We are firefighters, family members and friends who are primarily engaged in educating first responders, the community, as well as the parents of children with Autism, for the purpose of preventing wandering and drowning among individuals with ASD. Our primary purpose is to provide workshops for first responders in order to educate them on the dangers of wandering and drowning as well as to provide opportunities for families, friends and/or caregivers to learn about what they can do to prevent these tragedies from happening. Firefighters vs Autism provides information to the community in general on the dangers that individuals with Autism could face.

Through various fund raising events and merchandise sales, we are able to host workshops for first responders and care givers, provide swim lesson and drowning awareness opportunities to families impacted by Autism, pool fencing to families who cannot otherwise afford it, and community wandering awareness seminars as well as therapy events for those effected by Autism. We also provide education and/or counseling for those families dealing with an individual with Autism.

We are currently operating out of Tucson and southern Arizona but hope to expand into other communities across the nation. We also plan on donating to other 501C3’s that share in our organizations mission.

Camp CaPella

The mission of Camp CaPella is to provide quality of life experiences for people with disabilities and their families by providing year round accessible recreational and educational learning experiences.
The purpose of Camp CaPella is to provide campers with a well-rounded recreational program which will include activities relevant to the camp's philosophy. One of our main objectives is to promote the physical and emotional well-being of campers through a program of fitness, exercise, socialization, and involvement in a positive setting. Within this environment, campers will have the opportunity to continue their pursuit of individual educational and peer related goals, further enabling them to develop independent lifestyles.

The philosophy of Camp CaPella is for all campers, regardless of ability, to be afforded an opportunity to enjoy a summer program offering learning experiences, recreational activities, and fun! It is our hope that this safe environment will maximize their abilities and willingness for participation, and is appropriate to foster their self awareness, growth, and development.

Beyond Autism

As parents to children with autism, we learned rather quickly that we had to be strong advocates for our children; we had to be their voice. What we have always believed as parents is that our children deserve what every child deserves: a safe and loving place in which they can express themselves freely as individuals.

Throughout this journey we have also found some amazingly talented and compassionate professionals that share our vision. Day in and day out, our team members strive to impact our children’s lives with an abundance of knowledge and an endless supply of compassion.

Our commitment is to our students, their families and our team members. We are driven to ensure that Beyond Autism grows smartly with an exceptional work ethic and high energy that will ensure its longevity.

Core Values
We promise to look beyond autism and embrace the person first as an individual. Autism does not define who they are.

We promise to value the uniqueness in each of our students by promoting their creativity, celebrating their strengths and encouraging their personal expression.

We promise to collaborate with our families to create balance between goals and expectations, creating a cohesive relationship based upon a mutual respect and understanding.

We promise to work towards achieving not only academic goals, but also social and life skills through education and life experiences.​

Brooklinn
Brooklinn was born with profound hearing loss, she wears cochlear implants which are good in small groups, but large groups it is difficult for her to hear and she misses out on things. We are raising money for an FM system that connects her cochlear implants. Whomever is speaking wears a microphone and what they say goes straight to Brooklinn. She LOVES to draw, she doesn’t go anywhere without her sketch pad and colored pencils. When she’s not drawing she loves playing volleyball and is active in 4H where she is her clubs Historian. She shows chickens, cavvy and rabbits. She also does sewing, crafts, photography and wood working. She likes reading Goosebump books and the Dear America book.
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    Bret

    11 yrs old

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    Jared

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    Riley

    14 yrs old

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    Brooklinn

    11 yrs old

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    Simon

    10 yrs old

Bret is an 11 year old with Autism along with severe anxiety and sensory processing disorder. He works very hard in school and Math is his favorite subject. He participated in the school choir for the first time this year and even sings along with his classmates. He loves playing on the computer, watching YouTube videos, Pokemon, Roblox, Minecraft, fire trucks, and he wants to be a firefighter when he grows up.

Jared has ADHD, severe social anxiety, and autism. Jared has come a long way in just a couple years of who he is and what he likes in life. Jared is an aspiring writer and artist. He enjoys learning about world wars, military tanks and designing characters for his book. Jared is a shy but outgoing guy who has become more involved in discussions he is passionate about. Jared continues to thrive and move forward with his challenges in life and never gives up.

Riley is a 14 year old Autistic girl. She was diagnosed at the age of 2. She also has a severe anxiety disorder. Riley has a great personality. She loves to make people laugh. She enjoys drawing and playing on her iPad. One of her favorite places to be is Camp Capella.

Brooklinn is 11 years old and lives in Washington State with her mom, dad and sister. She was born with severe to profound hearing loss. By the time she was 3 years old she had lost all her hearing and received her first cochlear implant. When she was 7 years old she received her second cochlear implant. Brooklinn LOVES to draw, she doesn’t go anywhere without her sketch pad and colored pencils. When she’s not drawing she loves playing volleyball and is active in 4H where she is her club's historian. She shows chickens, cavy, and rabbits. She also does sewing, crafts, photography and wood working. She likes reading Goosebumps books and the Dear America book. She loves unicorns and her favorite movies are The Nightmare Before Christmas and Where the Red Fern Grows. Her favorite holiday is Halloween and she loves hanging out with her family and friends. Something that is very unique about Brooklinn is that she has two different colored eyes. One is blue and one is hazel!

Simon would like you to know that he is a “cat-loving and fun-loving guy who also loves both math and science”. Simon is 10 years old and lives outside of Boston, MA. In addition to cats, math, and science, he also enjoys Cub Scouts, singing with the choir after school, swimming, and kung-fu. He just earned a white stripe on his yellow belt! When he’s not busy with school or other activities, you’ll find Simon cuddling with his cats, Moofie and Teddy. Simon has an Autism Spectrum diagnosis and ADHD. Simon aspires to be a Quantum Physicist when he grows up!


United Mitochondrial Disease Foundation

April 23 - May 06

Our Mission: To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

Patients and families are our focus!

When a patient or parent first hears the phrase ‘I suspect mitochondrial disease’, UMDF is usually the next call they make or their first website visit.

In fact, on a yearly basis, UMDF answers and helps more than 4,000 people navigate their mitochondrial journey with phone support. Emails seeking support and resources are countless.

Bottom line – UMDF is ready to help.

UMDF supports newly diagnosed patients with critical information on treatment and care.

Our vast online viewing library provides countless topics on living with mitochondrial disease.

When a patient or family member calls or emails the UMDF, we try to answer questions quickly.
If there is a question we are unable to answer, we’ll help you get the information you need.

If your doctor needs information, we will point him or her to an expert in the mitochondrial medicine field for answers.

And of course, we are here to listen in difficult times.

UMDF connects patients to each other. UMDF Ambassadors across the nation provide patients and families with support in their state or region.
We also connect at UMDF Family Support Meetings and our National Symposium. This symposium is the only mitochondrial medicine meeting where patients, clinicians and scientists are able to network and interact.

We are building the ‘Roadmap to a Cure’  for the entire community— but we need the help of all patients, families, and cargivers to have an impact on treatments and cures.

How can UMDF help and support you today?
Connect now or call us at 888-317-UMDF (8633) today. Stay in touch with the latest information and newsletters.

We are here to serve the entire patient community now!

Scientific Research
Since UMDF’s start in 1996, nearly $12 million in grants have been awarded to support the research that scientists believe could lead to a faster and painless diagnosis,  treatments and potential cures for mitochondrial disease.

Our community ‘Roadmap to a Cure’ is our focus for the years ahead.

We invite you to click here to view our research progress from 1996 through today.

Clinician/Scientific Education
“There are not enough doctors who know about mitochondrial disease”. It’s a common phrase we hear too frequently.

UMDF works to educate clinicians and allied health members about mitochondrial disease and its impact on other diseases and human health.

We do this through our educational sessions at leading medical meetings, and on the grassroots level.
UMDF’s Symposium devotes time to a multi-day platform for the scientific and medical community so that they may learn about the disease and how to help patients.

For patients, UMDF is spearheading an effort to collaborate on the next generation of treatments for patients through the development of a Mito Care Network.

In addition to funding research, UMDF offers scientists an important overview of mitochondrial disease and the latest discoveries and information on our website.

None of this would be possible without the generous donations from patients and families, or funds raised  through participation in Energy for Life WalksFamily Research Funds, and other outstanding events.

It is the job of our entire community to raise the level of awareness when it comes to mitochondrial disease.

UMDF actively works to raise the profile of mitochondrial disease and dysfunction through traditional and social media.   Story placement in print and broadcast media last year alone resulted in over 500 stories in which UMDF, its patients and families, scientists, and clinicans were mentioned.
This resulted in nearly 400,000 new visits to the UMDF website where the number one page viewed was “What is Mitochondrial Disease”.  

Through your state and federal advocacy efforts, mitochondrial disease and UMDF is a recognized partner on Capitol Hill.

But more needs to be done. You can help by joining us in active participation during ‘Awareness Week’.  You can help us get media coverage to spread awareness. We must continually raise our profile so the phrase “Mito What?” becomes a phrase of the past.

We’ve made tremendous progress in educating the federal government about mitochondrial disease.

More than a decade ago, UMDF asked the government to report the amount of dollars it was investing in mitochondrial medicine research. Sadly, that dollar amount was far too low.

Since that time, we’ve introduced legislation, completed four ‘Day’s on the Hill’ and now have the attention of the National Institutes of Health (NIH).

Because of the hard work by our patients and families, UMDF was able to secure appropriations language in the Department of Defense budget, allocating more than $11 million dollars in scientific research towards treatments and cures!

But, our community needs to continue this work by participating in advocacy, supporting the UMDF created Congressional Mitochondrial Disease Caucus ,and by working on thestatewide level to address the needs of our entire mitochondrial disease community.
www.umdf.org
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    Liam

    11 yrs old

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    Rachel

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    Timmy

    12 yrs old

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    Emily & Alex

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    Paper Clouds

Liam Schanzenbach is 11 years old and lives near Washington, D.C. with his parents, sister, and pet cat Flo. He loves to draw, collect and read comic books, build Legos, read and watch sci-fi, play video games, listen to endless episodes of “Adventures in Odyssey”, attend concerts, hike on the Appalachian Trail with his dad, and listen to rock music. Liam’s favorite bands are Skillet and Thousand Foot Krutch (TFK), both of whom he’s gotten to see perform live at Liberty University’s Winterfest. He aspires to one day play electric guitar just like them! Liam has gotten to be a student at one of Virginia’s first public charter schools for 4th and 5th grades, where his art teacher has really helped him grow his drawing skills. His mother has Mitochondrial Myopathy, and when he’s not busy with school or playing with friends, Liam helps her with her household tasks by sharing his own high energy and growing muscles!

Rachel Schanzenbach has Mitochondrial Myopathy and drew the inspiration for her design from her happy childhood growing up in the 1980s in our nation’s colorful Sonora Desert. Prior to college Rachel was homeschooled K-12 and in appreciation for how it benefited her own health and education, now highly recommends a trial of homeschooling for any child with delicate health. Rachel moved to Virginia in 2000, where she met and married her college sweetheart Daniel. They and their two children, now ages 14 and 11, have a great time learning and having fun and adventure at the UMDF Symposium when it’s in nearby Washington, D.C. Rachel’s inspiration for her quote “Be the difference, Share your energy” comes from the many Christians who’ve donated their physical help to her family during the hardest years of her progressing disease. Together they have shown her that when it comes to Mitochondrial Disease, anyone ready to share their energy can make a world of difference!

Timmy is a fun, energetic, and hilarious 12 year old who loves art, gardening, and any activity where he is outdoors. He has a diagnosis of autism spectrum disorder, as well as functional mitochondrial disorder. He loves school and adores social outings with family and friends. He is well known in our community for making people laugh.

Alex MacLellan loves to draw in his spare time and was inspired by his sister-in-law Emily Jurek to enter a design for this competition with UMDF. Like the girl in his drawing, Emily has Mitochondrial Disease and is a superhero because she uses her Mito Muscles every day, inspiring all those around her.

Any time you purchase a Paper Clouds Logo design, 50% of the proceeds go directly to the charity of that campaign!!


Throwback vs. Cancer

April 09 - April 22

You asked for it and Paper Clouds has done it again! We have brought together three cancer battling causes this campaign! Read on for more info about each one :)

Ronan Thompson Foundation

Ronan Thompson was a bright, energetic little boy that always kept his family smiling and laughing. In August of 2010, he was diagnosed with a stage IV Neuroblastoma and fought valiantly or the next 10 months. Ronan's battle with Neuroblastoma ended on May 9, 2011, but his fight will go on. Ronan continues to inspire his family in the way he lived his life full of passion, strength, and courage. He will live forever in their hearts and minds as the most beautiful little boy to ever have touched the earth. The Ronan Thompson Foundation raises funds for research that will find new and innovative ways to treat neuroblastoma, and ultimately, find a cure for this disease. The Foundation wants to create a World Class Neuroblastoma Research and Care Center and we're thrilled to help by contributing 50% of the proceeds from this campaign to this cause.

St Baldrick's Foundation

If you've never heard about St. Baldrick's, let us fill you in! This organization raises money for kids cancer research. Kids who are diagnosed with cancer have to be treated differently than adults with the disease. No child should ever have to face cancer and we are so happy to do our part in helping raise funds to help find the cure! To learn more about our incredible cause, visit www.stbaldricks.org.

Arizona Cancer Foundation for Children

Arizona Cancer Foundation for Children (ACFC) is a 501(c)(3) nonprofit foundation created to support Arizona children diagnosed with cancer and their families. The organization spotlights the need to significantly increase clinical research and treatment options for children suffering from cancer. Through a partnership with the Ronald A. Matrciaria Institute of Molecular Medicine at Phoenix Children’s Hospital, ACFC supports developing cancer treatments and therapies that specifically combat pediatric cancer. Chrisie and her husband, Nick Funari, started the foundation after Chrisie’s 5-year-old daughter, Ava, passed away from a three year struggle with Stage Four Neuroblastoma; an aggressive form of pediatric cancer.

Fly Brave Foundation

Our last cause is the Fly Brave Foundation. Their mission is to create an employment training program for adults with autism that have aged out of the school system, focusing on three essential building blocks; hands on skills training within the community, social skills, and healthy living. On May 21st & 22nd the Morton Golf Foundation is hosting their Golf & Guitars Music Festival and all the proceeds from this amazing initiative will go to the Fly Brave Foundation. You can find details about the golf tournament and the musicians playing this year's festival at www.golfandguitars.com
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    Maya

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    Eli

    9 yrs old

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    Donna

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    Demitri

    19 yrs old

Maya is Ronan's mother and she contributed two incredible quotes that remind her of her son. She was generous to share the story behind each of these special sayings with us. All good things are wild and free is my favorite quote by Henry David Thoreau. It stands for everything that Ronan was in his short little life and it is something I try to carry on for him in my life here. I try to live as wild and freely as possible knowing that tomorrow is never guaranteed. Everyday we are here is a gift and should not be wasted. "You keep me safe, I'll keep you wild" is another one of my favorite quotes. In my heart, I'm keeping Ronan safe forever. In turn, he is reminding me to keep going, to keep knocking down doors, and to keep fighting cancer for kids the non conventional wild way that he would want me to.

Eli lost his little sister Ava to cancer when she was almost 5 and he was 6. Eli and Ava were best friends. Ava was diagnosed with Stage 4 Neuroblastoma, an aggressive form of pediatric cancer, when she was just 1.5 years old. Eli was by Ava's side for all of her treatment - never giving her special treatment and always treating her just like any other little sister. Eli and Ava both wanted to make sure that no other kids ever get cancer and if they did get cancer they wanted to make sure that they would get better fast. Chrisie Funari, Eli and Ava's mom, started the 501(c)(3) non profit organization Arizona Cancer Foundation for Children after Ava passed away to stay true to her children's wishes and help cure children with cancer right here in Arizona. Eli is Co-President of the Arizona Cancer Foundation for Children children's program, Ava's Angels; a unique program where kids can help kids with cancer. Eli created both of the designs that benefit Arizona Cancer Foundation for Children for the next two weeks!!

The art in this campaign was created by Donna. Donna was born on July 20, 2005 and was diagnosed with an aggressive brain tumor - papillary meningioma when she was 19 months old. Over the next 31 months Donna underwent four relapses, four neurosurgeries, chemotherapy, a stem cell transplant, and twelve weeks of proton beam radiation treatment. In the face of everything, this little lady was an absolute joy throughout her life. She loved to dance. Her favorite color was black. She had an incredibly silly side and she was sharp as a tack. She had a different outlook on life than those around her and she often shared her point of view. Her greatest wish was to go to school and she was able to do so in her last two months. Despite spending much of her childhood in hospitals or around doctors, Donna lived with grace and joy. She inspired everyone around her to experience the moment, feel grateful, take a deep breath, and live their lives more meaningfully. Donna's mom, Sheila runs the blog Mary Tyler Mom and the Donna's Good Things Facebook page where she raises money to fight childhood cancer and shares her experiences as a mother. RIP, Donna, we’ll meet you there.  Donna Lubell Quirke Hornik, 20 July 2005 – 19 October 2009.

Dimitri (19) was diagnosed with autism at the age of 18 months and since then he's had an intense home program of teaching 3-4 hours a day, Monday through Friday. He's a student at Luther Burbank High School in their special education department. Despite limited verbal skills he's good at communicating what he wants- particularly if it's pizza or his iPad.