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CURE JM FOUNDATION
May 14, 2013

It has now been seven years since my son showed his first symptoms of juvenile dermatomyositis (JDM). He was looked at by two doctors who downplayed what I saw. 6 months later he had additional symptoms and while he then received solid treatment to address both symptoms, there was no thought to put the symptoms together. Even as additional and more serious symptoms arose, they were never considered together. This is because most physicians are simply not aware of JDM. The net result is that my son went 18 months with an untreated inflammatory muscle disease attacking his body.

Then we had specialists who opted not to follow even standard protocols for treating JDM. We were lost, angry and confused and unaware of options and supports. About this time I joined the CureJM group on Facebook. Through this group I have learned much and am therefore better able to find solid medical providers for my son.

CureJM sponsors research and clinics and my son we have taken advantage of both. Although we have not yet reached remission, my son is finally seeing a professional who works closely with the lead researcher supported by CureJM. In other words, he is finally in good hands.

Not only does CureJM support research and the clinics but the other goal is awareness. Awareness would have saved my son years of damage to his body. In the past couple of years I have found more and more providers in different specialities who have heard of JDM. I believe this is largely in response to the huge effort put forward by CureJM.

More feedback

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served

CURE JM FOUNDATION
October 16, 2012

My son was diagnosed with JDM five years ago. It wasn't until about a year ago I found CureJM. JDM is a rare disease and my family walked the path alone with no support for way too long. Since finding CureJM and becoming peripherally involved, I have experienced incredible support, learned a great deal more about my son's illness and have even been able to take advantage of medical resources supported by CureJM. My family has just returned from our first CureJM conference and for the first time my son and husband know we are not alone. CureJM cannot cure my child (yet), but they have provided resources which help me help my son.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served