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Susan M.

187 profile views
4 reviews

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

Since my grandson was first diagnosed 6 years ago the Cure JM Foundation has been my rock. They are always willing to help answer questions, give advice, comfort, support and rejoice the good times. Besides being a wonderful support group for families affected by JM they do everything they can to help raise awareness and research funds to help find a cure for our kids.
I have had the opportunity to attend a Cure JM Conference and learn more about this rare disease, not only from other parents going through the same thing but, from some of the leading specialists in treating and researching this disease. Cure JM funds this research so that doctor's can more easily recognize Juvenile Myositis so that our kids will get a quicker diagnosis, which is critical for a good outcome. They are also researching to find better treatments and one day a cure. Cure JM is the only foundation in the States helping parents and trying to find a cure!!! Without them I don't know how I would have gotten through the diagnosis of this disease and the last 6 years.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Role:  Volunteer

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

Cure JM has been a great support system for me since my grandson was diagnosed 5.5 years ago. I really don't know how I would have coped without all the wonderful people involved. This past weekend we had the opportunity to travel to the Cure JM Educational conference and meet the doctor's researching this disease looking for better treatments and a cure. To meet the wonderful people that are a part of this charity was one of the best highlights of this weekend. To know that all these people understand what we are going through and are there to support us is more than I could ever ask for!!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Role:  Volunteer

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

When my grandson was diagnosed with JDM in April, 2007, the rheumatologist we were seeing gave me the URL for the Cure JM Foundation. As soon as I was able to get online I went straight to this website. What I found was a wealth of information and support. The people at Cure JM put their life into raising awareness and funds for research to try and find a cure for Juvenile Myositis. They put their heart and soul into helping those of us caring for these kids, cope with the day to day life of medications, pain, needles, bloodwork and the feeling that they are different from their peers. I have come to love the people at Cure JM as my family and will never be able to thank them enough for everything they do!!!

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

Role:  Client Served

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

My little man was diagnosed in April 2007 with Juvenile Dermatomyositis. Without Cure JM I don't know where I would be today or how I would have gotten through that first year.

Everyone at Cure JM is there to help raise funds for research so that hopefully one day there will be a cure; to support families with children/young adults that suffer from this horrible disease. Research money goes to the the few doctor's in Chicago and Washington that are working to find better treatments and a cure for Juvenile Myositis. Cure JM also helps to raise awareness of this orphan disease.

Cure JM is run completely by volunteers who would give the world to help a find a cure for these children. These people have become very special to me. I am blessed to have them in my life. They care a great deal about this cause and we all hope that with funds raised and research on-going that one day our kids will have a cure.

Role:  Client Served & I try to give my support to families dealing with Juvenile Myositis, in any way I can. As well as raising funds for research.