3 out of 1 million.
Who wouln't want to be part of such a rare group? Jake wouldn't. Not when it's a staticstic for a rare autoimmune disease diagnosis.
Jake is a life long athlete that was dealt a hefty blow in June 2016, just weeks before his 16th birthday. He was a HS freshman and former gymnast turned pole vaulter crushing personal bests every week, when aches and pains began to affect his daily life. "Work out. Stretch. You're just out of gymnastics shape," we told him. A rash around his eyes was visible. "It's allergies. Use your medicine." Struggling to walk up steps and needing extra support to get out of the car were other signs that something wasn't quite right and a call to the pediatrician was made.
After a blood test and 3-day visit to Childrens Hospital of Philadelphia the news of a rare autoimmune disease shocked us all. Juvenile Dermatomyositis was the new label attached to our strong, humble, smart, and motivated son.
From day one, Jake's outlook has been stoic. His response to this news was, "Mom, it's temporary. I'll be ok." Who knew his inner strength would get him from barely walking up steps to setting a personal record in pole vault in just 10 months? Jake did. He was determined to fight, work, and get back to his former self.
Now, two and a half years later, Jake is still setting PRs and working on eliminating medicines from his life. He is in medical remission. He refuses to let JDM control his life. College is in his near future and vaulting for a collegiate program is part of the plan.
JDM doesn't define Jake. Jake defines Jake. We couldn't be more proud of his strength and determination.
In May, 2019 the CureJM Foundation-Philadelphia chapter is hosting its inaugural fundraiser. Read below for the details.
Wouldn't it be great if Jake and his very rare group of warriors had a cure in their near future? With your help, more research can be done to make it a reality.
Join us Saturday, May 4, 2019! The walk begins and ends at Independence National Historical Park, 143 S 3rd St, Philadelphia, PA 19106.
Registration opens 4:00 PM (on-site registration available).
Walk Festivities begin 5:00 PM.
This event is free and open to the public.
Contact firstname.lastname@example.org for more information.
All proceeds benefit Cure JM Foundation, a 501(c)(3) nonprofit organization with the mission to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.
Through this walk Cure JM families, friends, and supporters are coming together to raise $20,000 for much-needed Juvenile Myositis research, including research Cure JM is funding right here at Children's Hospital of Philadelphia's Center for Applied Genomics.
Juvenile Myositis (JM), is a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. There are currently no FDA-approved treatments and no cure….YET!
But that’s where you come in!
Thanks to friends and family like you, Cure JM has made extraordinary progress in drug-development and genetic discovery. But, the reality is that we simply must move faster and in more areas of research than ever before and we need your support.
Every donation goes straight to Cure JM, and together Cure JM friends and families have raised over $12 million for JM research.
Can we count on you to help today?