On April 2nd, 2014 our lives were turned completely upside-down when our 7-year old son Bradley was diagnosed with Juvenile Dermatomyositis, a rare, life-threatening autoimmune disease which causes the body’s own immune system to attack healthy cells and tissues. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. At the time, Bradley was in first grade. He could barely walk, needed help getting in and out of bed, as well as getting dressed and brushing his hair. He had trouble swallowing. Our very active 7-year old was "stuck in a body that doesn't work" (His words, not mine).
There are no FDA approved medications that are indicated for what Bradley has. Most of his treatments have been derived by treatment for other diseases. His medication regime has included weekly chemotherapy injections for over four years, hospitalizations every 30 days for IVIG infusions for three years (that last about 14 hours), and steroids medications that weaken his immune system so his body will stop attacking itself. He has also sustained multiple emergency room visits as well as hospitalizations for the ugly side effects from these medicines.
Throughout it all, he always has a smile on his face. You may never know just by looking at him the bravery and courage that he has every, single, day.
Our 2nd Annual Walk Strong Across America is on July 4th.
We invite you to show your support by making a gift and walking with us on or before July 4th - from the comfort of your home, in your yard, or around your neighborhood.
Cure JM families, friends and supporters are coming together to raise $750,000 for Juvenile Myositis research. Reaching this important milestone will help ensure no promising research is left on the table in 2021.
Gifts will be matched by the Leetz Family Match. Every dollar makes a difference and gifts will be put straight to work to advance research for better treatments, better care, and, ultimately, a cure.
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, And there is no cure....YET!
But with support from friends and family like you, we’re getting closer to better treatments and a cure.
With this continued great support from families and friends, we were able to fund research at 20 prestigious research institutions, helping advance JM research at an unprecedented pace!
Your gift now will keep that momentum going. Every donation goes straight to Cure JM, and since inception over 90% of all funds raised go directly to research.
With endless gratitude,
The Van Ness Familyrt.