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Ginny B.

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2 reviews

Review for Dystonia Medical Research Foundation, Chicago, IL, USA

Rating: 5 stars  

DMRF helps to create awareness, research and outreach to the half of million people living with Dystonia in North America alone. With amazing, dedicated and hard-working staff, they help to people meet others with Dystonia. I was born with Dystonia and not diagnosed correctly until age 24. This is when I found the DMRF. Almost 10 years later, because of all the support of the foundation, I met other people with Dystonia, was inspired to have deep brain stimulation surgery from talking to peers, and have meet people on online support groups all over the nation and participated in a local fundraiser and some medical conferences. DMRF created an outlet that my family and I were searching for almost all my life. They truly changed my life.

Role:  Volunteer

Review for American Dystonia Society, Inc., Princeton Juntion, NJ, USA

Rating: 5 stars  

American Dystonia Society created a community that I had yearned for since feeling more and more isolated with dystonia. This past year, after experiencing progress many members offered comfort, advice, and words of encouragement through on line chats and often also gave the outlet to laugh which can be some of the best medicine. Through American Dystonia Society, I learned that others had been going through the same symptoms and experiencing mis diagnoses and feeling isolated and through this community, we came together to realize together we are strong and never along in dominating dystonia. We have come together to share stories, to encourage, to be positive, to keep our hope and spirits alive on our darkest and most painful days. If we can not literally speak or get out, we can type and know we have support on the other end. We have also come together as a community to Daisie awareness about our own unique experiences with dystonia and also about the disorder to our own respected literal communities. We have met one another, laughed, walked with our crooked chins together, cried together. And also, literally united for our first of many funraisers. We have created awareness and a community through all media sources and created brochures, teeshirts, pens, and will walk united to create dominance over dystonia.

I've personally experienced the results of this organization in...

United many of individuals with dystonia and their friends and family members to be a team and create awareness which also created donations for research. Uniting together keeps us internally strong so we do not feel alone or isolated. We also learn coping skills and ways to help ourselves, each other, our loved ones, and our community to dominate and win over dystonia with courage as dystonia can be extremely painful, isolating, challenges the ones affected to think outside of the box to keep hope alive.

If I had to make changes to this organization, I would...

Continue to expanding volunteers to take leadership roles and to expand awareness, research and community to keep hope that with awareness will come the scientific resources to help allieviate the debilitating symptoms of dystonia and someday find a cure...but right now, support and awareness are key in helping to keep strong and learn and lean on each other for support to bring questions to our doctors and friends and family in how they can best support our needs to win the daily tug of war battles for al

Role:  Volunteer & helped plan a local 5k in my community spreading awareness for dystonia.