A Global Success Story for the PMD Foundation
Each September we honor Leukodystrophy month with our annual Run, Walk or Roll event. We invite teams to make miles towards our goal of $25,000 to help fund research for PMD treatments and therapies. 100% of registration fees go to the PMD Foundation’s work on education, research, service and advocacy for those affected by Pelizaeus-Merzbacher Disease.
Winning x3 and Funding Research on PMD Treatments and Therapies
Our first win is the most obvious - significantly surpassing our goal of raising $25,000. We raised a grand total of $31,712.
Our second win is that we had help from around the world in raising these funds. We welcomed 360 participants from the U.S., Switzerland, and Austria.
Our third win - we were able to safely see 10 PMD Warrior Teams come together in support of their friends, families and communities. It’s been over a year of restrictions, distancing, masks and more. Being able to come together in safe groups for the Run, Walk or Roll event was a real accomplishment.
Meet Run, Walk or Roll Participants from Around the World
Michael
Michael lives in Pennellville NY. He is 5 years old, and is the happiest kid you will ever meet. He was diagnosed at the age of two with the classic form of PMD. He loves being in school and thinks every gathering is a party for him. He makes friends instantly and is incredibly smart. He loves to be outside in the breeze, and loves to kick around in the pool. Michael loves to dance and he never steps on my feet! He loves dinosaurs. His favorite shows are dinotrux, finding Nemo, and Dr. Pol. Michael loves spending time and laughing at/with his brother. He loves to play hockey, soccer, and basketball in his gait trainer and works so hard to give it his all everyday!
Joshua
Meet Joshua!! Joshua lives in Lake Havasu City, AZ and is 17 months old, and was diagnosed with PMD when he was about 10 months old. Josh's favorite person is his mom, but he also has a very special bond with his big brother. Joshua loves exploring his surroundings and trying to climb on things. He also really enjoys any water activity, but especially loves pool time. Joshua really loves music. One of his favorite toys is a little keyboard, but he likes most toys that light up and/or play music. Joshua also enjoys going for walks with his family. When it's time to wind down Joshua enjoys watching the Disney channel. Josh's mom added "Joshua has been such a blessing to our family. He is the happiest little guy there is. We love watching him learn new things, and just are overwhelmed by his determination. We are watching him move mountains. The love we get from him is such a joyous blessing. He's our rainbow baby and a true blessing from God!"
Ana - PMLD
Ana is 15 and she lives in Houston, Texas, with her parents, her older sister (when she is home from college) and her dog, Preston. Ana was diagnosed with PMLD when she was about 9 months old. Although Ana’s PMLD has progressed and she is not able to do everything she used to, she still loves to swim, going for car rides and playing with her electronics, usually many games at the same time. She also enjoys listening to music, watching movies, doing puzzles and saying silly things to annoy her parents, such as asking to go swimming in the middle of a cold, rainy day. Ana is very social and loves being with her friends and classmates at school. In spite of her limitations, Ana maintains a happy and cheerful attitude most days. She wakes up happy, and proceeds to wake up everybody else in the house by singing loudly, then she goes about her day without letting the disease affect her enjoyment. Living with Ana is a permanent lesson in how positive attitude can overcome virtually any obstacle that you are faced with.
Jaden
Jaden lives in Mexico, NY and after initially being misdiagnosed with Cerebral Palsy was diagnosed at 18 months of age with PMD. He will be 20 years old on Dec 5, 2021! Jaden has the classic form of PMD. He has a smile and a personality that lights up any room. Jaden loves school and is very social. His favorite thing to do is hang out in the barn with his Dad in the workshop and watch sports. Jaden also loves to swim and be outdoors. His favorite shows are Price is Right, Wheel of Fortune and Judge Judy! He loves it when anyone gets in trouble and gets yelled at so he loves Judge Judy! Jaden also loves music and has a wide range of tastes but his favorites are Johnny Cash and the White Stripes! Jaden also loves his dog and best buddy Cash and new puppy Hank!
Félix
Félix is one year and 9 months old (born December 2019) and lives in Geneva, Switzerland. He was 6 months old when he was diagnosed. He's an amazing little guy who never ceases to impress us. He's fun, loving and curious, and always up for a good laugh. He loves swimming and listening to music (or any kind of weird noises, for that matter).
Valentin
Valentin is 8 years old and lives in Austria, in a village close to Vienna. He is funny and very determined to get what he wants. Valentin is bilingual, speaking German and Dutch and his favorite things are swimming, playing on the tablet, cars and transformers. He has already had two jobs as a photo-model! His favorite foods are pizza, spaghetti and lasagne!
Introductions submitted by participants.
While the event is over for this year, stay in touch with the PMD Foundation to be the first to hear about our 2022 Walk, Run or Roll event. We have big plans to have an even bigger Virtual Run, Walk or Roll in 2022 with more warriors, participants, countries, and fun!
Missed out on making your donation? Donate now.
A HUGE thank you to our 2021 sponsors: IONIS, Upstate Construction Services, The Insurance Place, Erie Insurance, Avery Rental Property, Trailer Marketing Services, Skips Fish Fry, OCMIC, 29 Design Studio, and Black Creek Veterinary Clinic. Your support helped us make this event a success.
