July 2008 was transformational for our family. We learned that Shona, our bright and beautiful 3 year old daughter, had a rare, potentially life-threatening autoimmune disease that we had never heard of – Juvenile Myositis (JM). We learned, if left untreated, her muscles would become weaker and weaker, and that she could even die. And then we learned firsthand that treatment came with a host of rough physical and emotional side effects.
Four years later, we are thrilled to report that Shona is now off the worst of the medications and is as strong as she has ever been. However, we have no idea what tomorrow brings for her. She has had 3 flares since diagnosis, and we never know if or when the next one is coming or how bad it will be. When she flares, her muscles rapidly become weak and she must go back on medications with tough side effects.
Yet, even with these past setbacks and future uncertainty, we know we have been extremely fortunate on this journey. Shona was diagnosed immediately by her outstanding pediatrician. She has been under the care of the pre-eminent clinical researcher for JM. And her disease responds to treatment.
Many children with JM are not so lucky. Over the years, we have come to know of children who have lost their lives, and we mourn their loss deeply. We also know many more children whose daily existence is a struggle.
Since JM affects only 3 children out of a million, there is very little incentive for drug companies or the government to fund research to find a cure, and yet this disease can go into spontaneous remission, giving us real hope for a cure. Also, due to the close genetic relationship among autoimmune diseases, a breakthrough for JM could lead to breakthroughs for other autoimmune diseases which affect 23.5 million Americans.
Thankfully, the Cure JM Foundation, a non-profit led by JM families, exists to fill the funding void. To date, through grassroots fundraising, the Cure JM Foundation has raised $4 million for research and established two JM research centers, one at Lurie’s Children’s Hospital of Chicago under the direction of Shona’s specialist, Dr. Lauren Pachman, and another at George Washington University in Washington, D.C.
To raise funds for Cure JM to continue supporting critical research, our entire family is going to Baltimore to attend the 2012 Cure JM Conference and Fundraising Event held in conjunction with the Baltimore Running Festival. On October 13th (Shona’s 8th birthday!), Shona - and her 5 year old sister Somya - will be running in the Baltimore Kids’ Fun Run, while Mitali will be running the Baltimore Half Marathon. Rishi and 1 year old Shreya will be cheering us all on as we race towards a cure!
Please support Shona on her first ever race by donating to Cure JM today!
Thank you!
Rishi, Mitali, Shona, Somya, and Shreya Dave
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Prefer Donating by Check?
Make check payable to "Cure JM Foundation."
Write "in honor of Shona Dave" in memo section.
Mail to: Cure JM Foundation, 836 Lynwood Drive, Encinitas, CA 92024
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