My Nonprofit Reviews

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zebramom

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2 reviews

Review for Dysautonomia Support Network, Johnston, RI, USA

Rating: 5 stars  

When I found out my DD's had disorders called Ehlers-Danlos and POTS I was at a loss at what to do next. While there are great organizations supporting these disorders, I found my family within the Dysautonomia Support Network. These leaders and volunteers were there to personally come along side and educate, support, console and ultimately teach me how to advocate. In the 2 years since becoming involved I have traveled to Washington DC to meet with many of our leaders in person, listen to outstanding medical professionals and learned how to Lobby my Senators and Congress members on Rare Disease legislation! I joined the BOD for DSN and have held 3 fundraisers on behalf of DSN. Things I could have never imagined. The supportive and knowledgable friends I have made and the things I have learned through DSN have changed our quality of life. AND, this group knows how to have FUN!

Role:  Board Member
 

Review for Dysautonomia Support Network, Johnston, RI, USA

Rating: 5 stars  

I joined the organization to learn more and have support for my family. I loved it so much I started volunteering and now I am Vice President of the Board for Dysautonomiasupport.org

Role:  Board Member