Rebecca Karsten– “Hello! Welcome to a wonderful community that even though we never wanted to join; we are now so happy to be part of. Our daughter was only 2 when she was diagnosed with JDM and we got connected almost immediately through the website and family support networking. The first few months, other parents answered our questions and CUREJM helped us access and communicate with physicians that were deeply knowledgeable about JDM. Those first connections changed our journey for the better. We switched physicians, we tried different medications due to side effects, we even slept better after having our nagging worries taken care of. A big part of the journey was doing a walk to raise money for CUREJM funding. It takes a ton of effort to get these kiddos feeling better and it was worth the time and effort. Especially, when our daughter was on heavy dose steroids, we were able to get a ton of support for her and the amazing cause. We continue to raise money, even though she is doing better and is medically stable. We do this because want all the newly diagnosed kids and those who continue to need a cure to have the same support she did! Thanks to all the new families that are here, doing the best for our kids!”
Maneje– “I am so grateful for the funding that Cure JM provides the doctors that care for Felicity. I know that the doctors need a lot of time, information, and equipment to care for my child, and all of that is very expensive.
If I can do anything to help our doctors, I am willing to try. The doctors really are my hero, and have given my child back her life.”
Debbie Daum– “Why do I participate in the Holiday Challenge? You know that feeling of helplessness you feel as a parent when your child is sick & there’s nothing you can do about it? This is something we can do to help. Every dollar makes more research possible, and more research is providing results that can help not only my child, but hundreds of others like her. When you are part of Giving Tuesday, you are part of making a difference for everyone with JDM.”
Maggie– “Even though my son is healthy today, I continue to fundraise because research is crucial for advancing treatments and finding a cure. I believe in supporting this work to give all families hope for a future free from the fear of relapse or flare-ups.
I am grateful to all those that came before us and I am proud to do my part.
I have found that my friends and family are happy to support research for JM because they know what my son has been through.”
Elinor Dahill– “I give to Cure JM and fundraise for the same reason, To help raise funds to find a cure for JM. I want to help create better life for all of those suffering from JM, including my grandson.
I will be honest, at first I didn’t think that I was the kind of person that could do anything to help, but the other grandparents at Cure JM, including Randy Putt, showed me how every grandparent can be part of a brighter future for our grandkids.
These kids face an uphill battle every day, dealing with treatments, flares, and the uncertainty of what comes next. Although getting involved took me a little outside my comfort zone, I just think to myself how brave my grandson is every time he has to face a doctor or a treatment, and that gives me the strength to do what I can to improve his future.”
