BENEFITING: Cure JM Foundation
Jennifer Riley wrote -
Dear friends and family,
As many of you may or may not know, our sweet Emma was diagnosed with Juvenile Dermatomyositis (JDM) at the age of 6. JDM is a rare and life threatening autoimmune disorder that causes the body's own immune system to attack healthy cells and tissues. And there is no cure....YET.
For Emma, her story began at the age of 5. She was the happiest, most vivacious little girl you had ever met. She was the life of the party-the party she had planned. See, Emma was a doer, always organizing play dates, setting up itineraries and ALWAYS making sure fun was had by all! She learned to ride a bike without training wheels at the age of 3 because those boys in the cul de sac had nothing on her!
Then, overnight, it all changed. Our play dates and parties were traded in for afternoons on the couch, watching TV. That's all she had the energy and desire for. Something wasn't right, my heart told me. I felt like her light went out. And it had.
Month after month, test after test, doctor after doctor, we received her official diagnosis on June 12, 2012. The past 3 1/2 years have consisted of daily medications, weekly shots, infusions (varying from once a month to once a week) to more doctors appointments than most people endure in a lifetime. This has become her world. Believe it or not, it has been nothing compared to the heartache of a missed playdate, birthday party or class field trip. Try explaining that reasoning to a 9 year old.
This has been a fight our family hasn't shared with many, a journey all our own. This has been at Emma's request. She has been embarrassed, fearful to share a struggle no one could relate to. That is, until now. She is wise beyond her years and has realized that at the age of 9, she has a voice. By sharing her story, others would become educated on JDM. She knows, with knowledge comes power. Power to find a cure!!!!!
This January, Emma and I will be participating in the 9th Annual Cure JM Fundraising Event in St. Petersburg, Fl. I would like to invite you to join forces with me and my family in support of Emma and other kids battling JDM. Please help us find a cure and win this war!
Thank you for your suport,
You can be a hero to a child with JM.
Each year, approximately 2 to 4 children in a million in the United States are diagnosed with Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as Juvenile Myositis (JM). JM causes the body’s own immune system to attack healthy cells and tissues, which can cause pain, weakness, inability to walk and disfigurement. In some severe cases it can even be fatal. And there is no cure…YET.
And that’s where you come in.
On January 17th, 2016, families will be participating in the St. Pete Beach Classic to raise awareness of JM and raise funds for JM research. It’s all part of Cure JM’s 2016 National Educational Conference and Fundraiser, a multi-day event designed to help JM Families and Physicians connect while sharing the latest information in JM research and treatments.
Please consider making a gift now. Over 90% of each gift goes directly to Juvenile Myositis research and education programs, so your gift will bring us closer to a cure.
What could be more heroic?