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Ali_Z

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Review for Dysautonomia Support Network, Johnston, RI, USA

Rating: 5 stars  

I'm a Social Worker. I have been to events that have supported nonprofits that offer services ranging from suicide prevention, domestic violence, SAFE/SANE, Cancer, Alzheimer's Disease all the way to small local charities based within a few city blocks of Albany, NY.

I'm also a rare disease patient (EDS) who has several other orphan and rarely diagnosed things (like Gastroparesis and POTS). Until last month, I never had an opportunity to be around more than a handful of others who were gathered to support me.

On October 29th, I traveled from New York state to Rhode Island to attend DSN's first community fundraiser-- the RI Scarecrow Festival in Johnston.

Our organization recently became a 501C3, and that was a pretty big feeling for me as it was. I had been sitting at the very first meeting, which was also held in Rhode Island on September 29th, 2012. It had been just a few days since the positive Tilt Table Test that ultimately led to my diagnosis, and the only support I could find when I asked Google for it was that meeting. So, I got in my car and drove from Albany, NY to Providence, RI. While sitting at that table in the Nordstrom's Cafe where we met, I knew we'd become a nonprofit. I saw it as clear as I saw the coffee I bought sitting on the table that day. A few days later I called up our Founder, Amanda Aikulola, and told her so. She told me I was crazy in that conversation, and in the years since, even while we have become the best of friends, she refuses to take back the assessment that I am indeed crazy!

Watching about 2 thousand people show up to a community event that was designed around spreading awareness, raising funding for our member scholarships and service dog grants at a fall festival was' mind blowing. Life changing. I am still processing it.

Maybe if I had a disease or a syndrome that was more common, I would have long since understood what it can mean to have the support of an entire community' but I have something that is neither common nor commonly recognized. So, it was truly mind blowing and life changing. I found that I am 'addicted to THAT kind of support, THAT kind of awareness and THAT kind of community!' as my Facebook post from that day said.

I am so proud of my friends, who make up DSN's Rhode Island Chapter. I am so proud of all our volunteers and members! We did some phenomenal things in 2016, during our Dysautonomia Awareness month this past October, and throughout the 4 years we've been going, doing and being since that first meeting at Nordstrom's Cafe!

We turned something that started with a few people sitting down at a table in a cafe in Providence, RI into a nonprofit from the ground up!! For a group of dedicated people who are also sick, struggling with symptoms and living their lives, we have an awful lot to be proud of 4 years later in 2016!!
I have said it before, I'm going to say it again, and I will say it a million times over-- if I have to be sick, you're the best people in the world to be surrounded by and to call friend!!

This is a picture of me with two of my RI friends from that day at the Scarecrow Festival-- Christine is on

Role:  General Member of the Public