In the early 2000s, there was no specialty program for individuals with Down syndrome in the tri-state area – but one group was determined to change that.
The first CHOP Buddy Walk® was created in 2002 by six families with one mission: to raise funds to support the creation of a specialized program for individuals with Down syndrome.
Each person brought their expertise and skills to the shared venture: organization, accounting, advertising and public relations, posters and T-shirts, food and volunteers.
The inaugural event was held on a chilly morning in November 2002, nestled in a small parking lot across the street from a Special Olympics event at Villanova University.
Activities included carnival games and basketball, sing-a-longs with Mr. Pete, an appearance from singer-songwriter Eric Bazilian of the Hooters, and of course, a ceremonial “walk” around the parking lot. There was food, raffles, information for families and introductions to three early clinical leaders – Mary Pipan, MD, David Lynch, MD, PhD, and Kim Schadt, MSN, CRNP, CCRP – all who would become the first staff members of the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP).
The event drew hundreds of families, local media attention and raised $157,000. Those funds were donated to CHOP to help launch and support the Trisomy 21 Program, which officially began in 2003. Since then, the event has raised more than $4.4 million to support breakthrough care and research for individuals with Down syndrome at CHOP.
Today, CHOP’s Trisomy 21 Program is one of the largest multidisciplinary programs in the country dedicated to the evaluation and ongoing treatment – including emotional, behavioral, developmental and neurologic health needs – of children and adults with Down syndrome.
Some of the of CHOP Buddy Walk® founders share below how the event’s success has paralleled their own children’s inspirational journeys. Now young adults, their children have jobs, go to college, do volunteer work and are active participants in society. They are forging their own paths forward … with the support of their families and a dedicated team of clinicians at CHOP.
CHOP Buddy Walk® founding family members include Linda Cartwright, Susan Davis, Jacqui DiDomenico, Ed McLaughlin, Lizanne Pando & Grace Wadell.
Here they share their success stories.
Linda Cartwright, mother of Steven
“My son, Steven, has been a big part of the Buddy Walk and was in the care of Dr. Pipan in his younger years. His physical health, behavior, social and emotional well-being, as well as his education, were significantly impacted and improved. Simple things like being on a poster or on a TV show promoting the event gave him self-confidence and created a community that recognized and embraced him. He now attends a college program – fulfilling his dream – and hopefully will be employed and living independently after graduation.”
Susan Davis, mother of Sara
“My daughter Sara was 2½ at the first Buddy Walk. She was among the first patients seen by Dr. Pipan in 2003. I was focused on keeping Sara healthy because I believed that for a child to do their best in academic settings, they must be as healthy as possible. Although Sara was born with a ventricular septal defect (a hole in her heart) it was repaired at 7 weeks of age at CHOP and this child has never looked back! She has been extremely healthy, with only one other surgery to remove her tonsils and adenoids at age 3. Sarah continued to see Dr. Pipan every two years through her teen years. There were two really significant events that changed Sara’s life:
- Dr. Pipan recommended the Noom Green/Yellow/Red simple way of classifying food to help Sara understand how to maintain her own healthy weight. This has been critical in Sara going away to college and maintaining a healthy weight on her own. Sara does her own workouts daily using videos of yoga and cardio routines online and enjoys biking and swimming.
- In response to our request about higher education options, Kim Schadt, MSN, RN, the CHOP Trisomy 21 Program’s first employee, gave us information about Thinkcollege.net. This was totally life changing. Sara ended up going to college at East Stroudsburg University. We would not have known about these programs if it were not for Kim!”
Jacqui DiDomenico, mother of Michael
“Michael has benefitted from the Trisomy 21 Program is several ways. Early on, he received a diagnosis of speech apraxia, which at the time was difficult to get. Thanks to Dr. Pipan, we were able to secure the proper speech therapy. Michael spoke at his high school graduation and that would not have been possible without the Trisomy 21 Program and CHOP interventions. As he has grown and gone through stages, we have accessed neurological exams and ruled out potentially serious medical concerns. We were able to participate in the Down syndrome growth study and other studies directed at individuals with trisomy 21. We hope participation in these types of studies will help children born long after Michael.”
Lizanne Pando, mother of Jenna
“Jenna was the first patient to the Trisomy 21 Center and the team told me a lot in our first 2-hour appointment. Dr. Pipan tested Jenna in all sorts of ways. She took the time to ask what concerns I had about her development. At that time, I had three big concerns:
- Jenna was learning to say words and then losing them. I’d taken Jenna to four specialists for this. It seemed like such an odd thing.
- Jenna seemed to have sporadic discipline issues
- She was not yet potty trained at age 3.
Dr. Pipan told me she was diagnosing Jenna with a speech disorder called speech apraxia and we were going to get her help. She also told me Jenna did not understand a “negative” inside a sentence and gave me a book, “1, 2, 3 Magic” that she used for kids’ discipline. It worked like a charm! She also gave me a potty-training manual for kids with disabilities. This might all seem trivial, but I cried with relief that we finally had someone to see our children and help them grow to their full potential.”
Grace Wadell, mother of George
“There is always more work to be done, but I know we accomplished our original goals because when our son, George, was in 6th grade, he attended a summer camp at Radnor Middle School and at a performance at the end of camp, the director insisted I sit next to a woman with twins. Then I noticed both of the beautiful twin girls had Down syndrome. It turned out they also had struggled when they were young, but received incredible care including oxygen at home, nursing and feeding support because of CHOP. The mom asked me if I knew about the incredible Trisomy 21 Program that had met with her before her children’s birth and helped her every step of the way. To know we had a part in making that happen …. It was a thrilling and happy moment!”