Thank you for donating to our Ascent 2 a Cure initiative, a "Rare Experience for a Rare Disease..!!"
I am entering the 29029 Everesting event in Stratton Mountain, VT in 2021... to raise money for the Cure JM Foundation, in honor of my daughter Ryan, and all of the other children and families impacted by Juvenile Myositis.
29029 is a grueling endurance event, where you summit these mountains, then take the gondola down, and do it all over again until you've climbed the vertical foot equivalent of Mount Everest, 29,029 vertical feet..! At Stratton, VT that is 17x up! AND, we've got to complete this challenge in under 36 hours!
This is an extremely difficult physical challenge, but it's NOTHING compared to what these children with JM go through as they battle their disease. Only 3 in 1,000,000 childred each year are diagnosed with this rare, life-threatening autoimmune disease, which causes the immune system to attack healthy skin cells and muscle tissue, often in the legs/hips and neck/shoulders area of the body. If left untreated, the children lose their ability to walk, talk and swallow. Rare diseases unfortunately do not receive the attention or financial support they need, because they affect so few people. But that doesn’t mean these kids deserve anything less than the best treatments available. So I ask you today, please Do Something Rare for Someone that’s Rare, and help us raise money for the CURE JM Foundation by supporting our team..!
Here's a personal story of my families' experience with JM over the last two years:
"In September 2017, one week before Ryan turned 3 years old, she was diagnosed with a rare, life threatening autoimmune disease, Juvenile Myositis. Normally a very active girl, within days of her diagnosis Ryan could no longer run, or walk up the stairs. A few days later we were at Hackensack University Medical Center, for Ryan’s first intravenous treatment of IVIG, as well as the start of daily high doses of Prednisone and a weekly shot of Methotrexate. The daily Prednisone lasted for the next 9 months, causing wild mood swings and weight gain. The 8 hour intravenous IVIG treatments continued once per month for 23 straight months, just recently coming to an end this past September 2019. And the last to go, the weekly Methotrexate shots, continue to this day. I’m happy to report that two years after her diagnosis, Ryan’s test results are clean, and she’s a very active 6 year old again… It was a very long road, as stressful for my wife and I as it was scary for our little girl. We are now on a mission to raise funds for continued research of safer treatments, and one day a CURE for JM." - Michael Parnell
Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. And there is no cure... YET. But that's where you come in.
Thanks to support from friends and family like you, Cure JM is funding research at more than 24 prestigious research institutions, helping to advance JM research at an unprecedented pace.
And while we should be proud of all we have accomplished together, our challenge today is that we simply must move faster and in more areas of research than we ever have before.
Cure JM's Strategic Research Plan calls for substantial new investments to identify the genes that cause JM and to understand their role. The plan calls for investments in drug discovery and development so children will have more and better treatments.
And the plan calls for speeding basic research out of the lab and into the clinic through partnerships with pharmaceutical companies that will be needed to bring new treatments for JM to the marketplace.
Accomplishing these research goals is within our grasp, and Cure JM's determination to succeed is unwavering, but we need your help.
Please consider clicking "donate" to make a gift to Cure JM today.
Checks can also be made out to Cure JM with Ascent to a Cure in the memo. Mail to Cure JM, P.O. Box 45768, Baltimore, MD 21297.
Your gift now will give HOPE to Ryan and other kids that need it most.
THANK YOU for supporting our Team, our Challenge, and most importantly our CHILDREN impacted by this disease!
Michael Parnell & the Ascent2aCure Team!