New this year at the National Conference! More sessions that YOU asked for, including more teen, tween, and children’s activities, a mental health focus group, and more time to interact with prominent physicians and researchers, a as well as Cure JM’s Walk Strong to Cure JM® on the beautiful Hyatt Lodge at McDonald’s Campus in Oak Brook, IL.
“Once we got to the conference, everything started to come together for us, what Cure JM was and the importance of it in our lives. The classes, the connection, the relationships, the support, the goals and the experience changed our bleak outlook. We had found what we were looking for and they needed us as much as we needed them.”
-- Joy, Livy’s mom
“I am the mother of a child, now 18 years old, with JDM. She was diagnosed at age 6 and has been in remission for over 4 years.
When she was first diagnosed it took awhile to find the right medications. I went to a meeting of the Myositis Association in Seattle and met another JM family, but it didn’t seem that there was much of a focus on children. At the end of her first year in treatment I went to Washington D.C. for a Cure JM conference and heard about Dr. Lauren Pachman. I contacted her office in Chicago and I took my daughter to see her. I wanted to make sure my child was seen by someone who had years of experience with this illness to make sure we were finally on the right track with medications. We continued to visit Dr. Pachman and have her consult with our doctor in Seattle for the next 3.5 years.
I got involved with fundraising for Cure JM a year or two after diagnosis and also began talking to Shari Hume about helping to support families with more educational materials. I became a Family Support representative and helped put together our first welcome packets. I continued to go to conferences, and began leading workshops for parents on Coping Skills. I joined the Research Committee and the board of directors a few years ago. All in all, I've been involved with Cure JM over 10 years in various capacities. I continue to be the International Family Support Representative. I've also attended GCOM, CARRA and ACR meetings as I continue to learn about the science and care of children with JM. Currently, my passion is for integrating mental health assessment and care into all treatment plans and to push for more research in this area. Cure JM has been a lifeline for our family and an opportunity to give back to others on this same journey
I am a former psychotherapist and a writer. I have spent the past 10+ years writing poetry about my journey as a parent of a child living with a chronic illness. I started a writing workshop for parents who have a child living with chronic illness at Seattle Children’s Hospital more than 7 years ago, and that led me to having a book of poems called The Moth Eaten World published in 2014. Because research, science, illness, healing and medicine has been such a big focus of my life I also wanted to see if my work could help build bridges between these disciplines and to include those living with chronic illness and their caregivers. My recent chapbook, The Body Lives Its Undoing is that book. Published in 2018, it also includes original, visual art from members of the Benaroya Research Institute (BRI-a Seattle based organization that deals exclusively with a variety of autoimmune disorders), and from patients and parents. Though I received grants to research and write the book, BRI helped produce and publish it. The book can be ordered here, and all of the proceeds go back to the Benaroya Research Institute.”
--
Suzanne Edison, MA, MFA, and Cure JM Board of Directors
TIGER LIVY STRONG
We invite you to pre-order a copy of Tiger Livy! Check out the video below to see what this book is all about and go to tigerlivyproject.com to place an advance order.
Every person who shares the Tiger Livy video will be entered into a drawing for a free book for you and the children’s hospital of your choice. Share the love and Cure JM!
JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis.
New York Walk Strong® Kickoff Event
May 19th, Scarsdale, NY
2nd Annual Swing fore a Cure, hosted by the Massachusetts Chapter of Cure JM Foundation
May 20th, Country Club of Halifax & Shanks Restaurant, Halifax, MA
Cure JM Foundation 13th National Family Conference and Fundraiser
June 21st - 23rd, Oak Brook, IL
6th Annual Cowboy Brad Concert for Cure JM
July 13th, YMCA of the Rockies, Estes Park, CO
Swing fore a Cure Columbus
August 17th, Golf Club of Dublin, OH
Contact for more information and to get involved.
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