Savannah is an 8 year old beautiful, brave, and gifted little girl who was diagnosed in July of 2013, with an extremely rare and life threatening autoimmune disorder known as Juvenile Dermatomyositis (JDM).
JDM, is an autoimmune disease, in which the body’s immune system attacks its own cells and tissues. Weak muscles and skin rash are the primary symptoms. There is no cure for JM. Some children experience a mild form of the disease and may go into remission. Others follow a more severe and potentially debilitating course that can be life-long. Some JM patients will have a loss of range of motion. Some will battle an array of serious complications, resulting in the inability to walk, ongoing pain, disfigurement and even death. Whether the course of the disease is mild or severe, JM is life-changing for all of these children and their families.
Diagnosis is not always easy. Awareness needs to raised so treatment can start sooner. Being diagnosed in the early stages can lead to a better outcome. Along with awareness, research needs to be done to find better treatment options and hopefully a cure. Research facilities and Physician training to raise awareness is expensive. It is harder for rare diseases to recive grants and funding versus diseases that effect a larger portion of the community.
And that’s where you come in.
The weekend of February 17-19, 2017, over 100 Cure JM families from around the United States and the world will be attending the 10th annual Cure JM National Educational Conference and Fundraising Event in Austin, Texas. The conference is a weekend-long event designed to help JM Families and Physicians connect while sharing the latest information in JM research and treatments.
As part of the weekend, Cure JM families will participating either the Austin Marathon or the Cure JM Texas Walk for Kids to raise awareness of JM and raise funds for JM research.
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?
We thank you for your support and consideration,
Savannah, Bud, Ryane, and Wyatt
Sunday, February 19, 2017
Just outside Austin at the Lakeway City Park, 502 Hurst Creek Road, Lakeway, Texas, 78734
9AM: Registration opens
10AM: Walk Kicks Off!
11AM: Post-walk food, games, prizes, bounce houses, and family fun
Join us in the Inaugural Walk Strong to Cure JM and help us cure Juvenile Myositis!
Juvenile Myositis (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!
Join a fundraising team or make a gift now and you will be bringing us closer to a cure for JM.
To learn more about the Walk, contact Walk Chair April Duley at firstname.lastname@example.org.
To learn more about the Cure JM Conference, contact Conference Chair Kristine Alderfer at email@example.com.