Stephanie Stilling, First-Time Attendee

Cure JM 2013 Annual Conference and Fundraiser Recap

The Stilling Family

The Stilling Family

Our family had an amazing experience participating in the Cure JM Annual Conference and Rock n Roll Mini Marathon in Chicago the weekend of July 21. A year into our 5-year-old daughter Haddie's diagnosis, we all felt ready and anxious to meet other JDM families and hear about their individual experiences. As her mom, I was also embracing the opportunity to ask specific questions about school, as Haddie and her twin sister Josie will be entering kindergarten in the fall. And finally, on all of our minds, our family wanted to hear...where are we with research and finding a cure for this rare and frustrating disease?

Early this spring, we started our fundraising efforts for the event. As a family, our initial goal was to raise $5,000 this year. We sent out our first communications in early March via email to friends and family. Team Haddie's fundraising page described how far our daughter has come in the past year from being unable to raise her head by herself or stand up from sitting (and suffering many infections along the way) to now playing soccer and swimming and having fun with her friends. We wanted our message to convey how well Haddie is doing now, while not denying the reality we all live with, that JM can raise its ugly face again at any time. Too much sun or an infection can start it all over again. We tried to explain in our fundraising page that this is why we need to find a cure!  We need a cure for those who continue to suffer, for those who unfortunately will have a flare or relapse, and for those kids who haven't been diagnosed yet, but will be soon.  

We sent out three communications to everyone we knew, one in March, the next in May and a final distribution a week before the race in July. We sent it to friends, family, co-workers, past co-workers, acquaintances, folks we do business with (our vet, our dog trainer, the girls' former teachers, our family photographer, etc. ). No one in our contact list was left untouched. We talked about the upcoming event to everyone we encountered, and if they expressed interest, we sent them a link to our page. Our nanny held a raffle for a free weekend of babysitting for $5 a ticket that raised an additional $800! Even more donations came in when we posted a link to Haddie's fundraising page on Facebook. All in all, we were astounded to find that all these supportive people in our lives donated almost $11,000 by July 21 in support of finding a cure!

So, what did we get out of attending the conference? Well, after collaborating with my husband as well as Haddie's grandparents, who attended the general sessions and breakout sessions, we had an overwhelming sense of understanding now that early identification and aggressive treatment of JM produces better outcomes. We all walked away wanting to help raise awareness, wanting to drop off "Myositis and You" books at local doctor's offices, and wanting to continue to fundraise to help these special pediatric rheumatologists who have dedicated their lives to treating and researching JM. It was encouraging to hear about medical progress. However, we don't yet have a cure so we will continue to support raising awareness.

The conference breakout sessions were so helpful. Rather than it being a day of just listening to others talk, the Cure JM conference was organized so we, as parents or grandparents, could attend the sessions of most interest and relevance to us. For us, that was the school preparation session and meeting the Cure JM board. Haddie's grandparents attended the special breakout session for grandparents which they felt was very educational and Ninja Nana taught them a lot! These small sessions made it very intimate, conversational and a great opportunity to share useful ideas and suggestions with one another.

The walk itself was very special, we were joined by aunts, uncles, cousins, and friends to support the cause. The day brought out a lot of emotion and a feeling of gratitude and appreciation to our family, our friends, and our new Cure JM family who accepted us with open arms. We never wanted JM as part of our lives, but we are so grateful to have the support of a community like Cure JM.

All our best,
The Stilling Family
Brad, Stephanie, Haddie and Josie

Conference Recap Links