On September 20th we’re joining together to fight Juvenile Myositis!
Our daughter Maddie was diagnosed with Juvenile Dermatomyositis 4 years ago when she was just 3 years old.
Juvenile Myositis is a group of life-threatening diseases (including Juvenile Dermatomyositis) that causes a child's own immune system to attack healthy tissue and cells. It can cause pain, weakness, inability to walk, disfigurement, organ failure and even lead to death. Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more.
And there is no cure…YET.
But you can make a difference! Our family’s goal is to raise $5,000 by September 20th. You can help by registering to attend the race and by clicking "donate" to give a tax-deductible gift now.
Maddie's story: Maddie was your typical 3 year old. She loved to play, laugh and have fun. In November of 2011 Maddie caught the flu. After recovering from the flu we noticed her cuticles were swollen, she had a rash on her face and purple eyelids. Her legs started to bother her and walking up the steps became harder.
We took her to her pediatrician, where she was diagnosed with Juvenile Dermatomyositis. She was put on IV steroids and methotrexate injections. She stayed a week in the hospital and the treatments have continued ever since.
It's been almost 4 years and Maddie still takes steroids, methotrexate and recently has started cellcept. We have come a long way since the initial diagnosis but still have a long way to go.
This past August due to one of her medicines she suffered a pseudo tumor cerebri with papalademia and is now having to take diamox.
We know that Maddie's only hope of a cure is through research, and, because this is a rare disease, research is only possible with your support.
It isn't easy for us to ask for donations. One big reason that we feel OK about asking is that we know how much impact each and every donation has, and how direct the impact is. Speaking for ourselves as donors, it is so important to us to know that nearly ALL of our donation has a DIRECT impact – over 90% of all donations go directly to research and education. Cure JM is a volunteer-managed organization, managed by parents and grandparents of children who battle Juvenile Myositis. These are volunteers who have a direct stake in making a difference in JM research.
And your support IS making an impact. You have made it possible to fund seven new research grants in the last year alone. These research grants are going directly to JM research and wouldn’t be possible without your support.