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2020 Top-Rated Nonprofit

Dysautonomia Support Network

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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: DSN is a U.S. based, 501 (C) (3) non-profit organization. Our mission is to provide support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders. In working with other organizations, together we are aligning to increase the scientific understanding of the relationship between dysautonomia, and related conditions in the hope of finding new treatment options. We strive to improve the quality of life of patients worldwide by increasing understanding, awareness and access to appropriate medical care for all patients. We aim to dispel the misunderstanding and prejudice that many medically complex patients face in medical settings and in society as a whole.

Target demographics: patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders

Geographic areas served: the community

Programs: support, resources, education, and advocacy.

Community Stories

25 Stories from Volunteers, Donors & Supporters

Angie T.3

General Member of the Public

Rating: 5

My daughter was diagnosed with POTS at 12 last year. I do not know what i would do with out them it has been extremely supportive and a place for me to go for information and things to share and learn.

Volunteer

Rating: 5

DSN truly provides what people with Invisible illness need.

Heidi D.1

Volunteer

Rating: 5

DSN provides support, facts, access to resources, humor and even an online community.

Client Served

Rating: 5

I was diagnosed with POTS several years ago, but knew next to nothing about. I began researching, but I was helped so much when I found support groups, including Dysautonomia Support Network! They share great information, help to make a community for those affected by dysautonomia, and do great awareness work as well. Thank you DSN!

Dawn M.6

Volunteer

Rating: 4

My daughter suffers from Dysautonomia and DSN has been an amazing resource for us and meeting lots of new people.

1

Client Served

Rating: 5

I was diagnosed in 2012.I Have POTS.Without a support group in my area that I knew of I reached out to this group and found support.Thank U .Please keep up the WONDERFUL Work.

Patty Atkinson G.

General Member of the Public

Rating: 5

Someone very near and dear to me was diagnosed with EDS & POTS among other things. Dysautonomia Support Network has been such a blessing! I’m thankful to know that she has been active in the DSN community, has learned so much, developed meaningful relationships and has great group support! DSN has most definitely given her what she needs to live her best life! I live far away and since I can’t be there for her in person, I thank God for DSN and all that they’ve done to support my dear forever friend

1

General Member of the Public

Rating: 5

I am the husband to a wonderful wife that has POTS, EDS and other comorbidities. When she was diagnosed about 4 + years ago we were searching for information and we found it and so much more with DSN!
My wife was an active member in the DSN FB groups and eventually decided to give back and volunteer. She was a moderator for our local state chapter on FB and we both held bi-monthly in person meetings. We got so much out of meeting others who were going through what we were both patients and their families came. Lots of learning and validation happened during those meetings.
What I like best about DSN is that no matter who you are and where you are in your diagnosis they meet you right there.
We have both attended and hosted in person and live events and have enjoyed getting to know the people in our community online and in our hometown and spreading awareness and educating others about invisible illnesses-Dysautonomia.
As my wife always says; DSN gave/gives her the tools and support to "Live her best life" and she has met some amazing people who she calls her DSN family and that is priceless.
Check out their website at dysautonomiasupport.org or look them up on FB to learn more about them and how they are impacting lives everyday!

Volunteer

Rating: 5

I am the dad of two daughters with Ehlers Danlos Syndrome (EDS), with one who also has Postural Orthostatic Tachycardia Syndrome (POTS). In seeking information that I could actually understand about the disorder and seeking to meet other patients and caregivers I ran across many organizations with great resources....

The most welcoming and informative of them all was Dysautonomia Support Network (DSN). We thought so much of the organization that my wife joined the Board of Directors, led the Fundraising Team, and ultimately was voted in as the President of the organization after several years as a member. Our family hosted a Fundraiser in the Fall of 2018 to spread awareness and raise funds for the organization.

DSN is a true community that supports one another to live their best life.

This photo is my family at an awareness event from the Fall of 2018. If you are on the hunt for a supportive group that is about more than your disease, has information on the disorders, doctors, school and work supports etc....check DSN out! The 2 best places to connect with DSN are on our website, and on our many FaceBook group organized by regions and interests (such as crafting, cooking, military families etc.)

www.dysautonomiasupport.org #dysfamily, #DSN

Angela Terracina G.

Volunteer

Rating: 5

I learned about DSN from a close family friend who has two daughters with Ehlers Danlos Syndrome. I wanted to know more about it and was directed to this organization that has helped them incredibly! From there I decided to help with a fundraising event so that more people could learn about DSN. Awareness and support are key!

1

General Member of the Public

Rating: 5

Dysautonomia Support Network is the best organization out there providing support and resources for patients and caregivers. Providing an amazing community where all can find support on their journey with Dysautonomia.

Shelby M.5

Volunteer

Rating: 5

Great community of support for patients, caretakers and physicians.

Kristi L.1

Volunteer

Rating: 5

As a Healthcare professional, I had never heard of Dysautonomia until I was diagnosed. This support network has helped me learn about the condition. I value the input that is provided by all of the team. I find myself now being able to contribute and help others.

1 Michele H.5

Client Served

Rating: 5

DSN provides much needed information to people suffering from these misunderstood diseases. They are educating doctors and patients. Their help is immeasurable.

1 Dyssupport Net

Board Member

Rating: 5

Dysautonomia Support Network has impacted and enriched my life in so many ways, I am forever grateful for the organization, all of its volunteers and its members.

3

Volunteer

Rating: 5

I have been a part of DSN since since 2017, when I was searching for answers and understanding. It brought tears to my eyes to see people talk about their experience, their symptoms, and their lifestyle with this disease. For the first time since my diagnosis, I realized I found 'my people'. I have watched DSN be such a huge support for thousands of people everyday, wherever they are in their journey including myself by providing an extensive online library, articles, videos, "Ask the Expert Series, Dr. Dysautonomia and much more to our community . I love that they encourage you to live your best life (not anyone else's, YOURS!) and they help you do it lots of support, outreach, the lifestyle clubs and being able to volunteer at many levels that fits your life to give back, the sky is the limit. I love this organization and cant wait to watch it continue to flourish in 2019 and beyond! It is my safe place- and home to my DSN Family.

3

Board Member

Rating: 5

I have worked with the management team of this non profit for over a year and have found them to be very passionate about this cause and extremely devoted to the effort to continue education of and support for Dysautonomia.

The team and board members are very professional and have the highest integrity.

3 zebramom

Board Member

Rating: 5

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!

Previous Stories
6

Board Member

Rating: 5

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

3 Emi M.

Volunteer

Rating: 5

I became a part of this organization as a member and a patient first. It allowed me to learn all kinds of information to help myself get better. Once I left college I wanted something to keep me busy and joined DSN as a volunteer. I gained confidence that I could work to some extent even though I was chronically ill and applied for a job which I got. Since then I have learned more and more and continued to gain confidence. DSN has been a fun and inspirational part of my life that has helped me grow and with all of that I have gained a family who understands spoonielife.

5 Shiva S.1

Client Served

Rating: 5

The information I gained through dysautonomia network helped me push for a correct diagnosis and, after 5 years of misdiagnoses, finally start treatment.

5

Volunteer

Rating: 5

I am a Registered Nurse who after 18 years of struggling with dysautonomia, finally received a diagnosis. Dysautonomia was something that I never learned about in nursing school. After learning to become my own advocate and still having my nursing blood coursing through my veins, I decided I wanted to work towards raising awareness and advocacy for it. I joined with another dysautonomia non-profit and did worthwhile awareness and support, but once I found Dysautonomia Support Network, I knew I found home!
Dysautonomia Support Network has become my second family. They have accepted me just as I am and poured so much into my life. I know that I am not alone now, that I am surrounded by people who truly get it, and have people who work to invest in my life. I decided to volunteer with DSN and started with moderating my local state support group. After a month or so, I joined the Advocacy Team and soon after was promoted to its Coordinator. The training, professional development, and mentoring have been life-giving. I have now been able to turn a tough and challenging moment in my life into a new found purpose. Each day I get to work on advocacy and awareness and connect with dysautonomia patients. I get to make new friends and family every day as we work towards a common goal: to provide support, education, awareness, and advocacy to those with dysautonomia and it's related conditions.

6 Holly G.4

Volunteer

Rating: 5

I've been part of Dysautonomia Support Network for a couple of years now. At first, it was on one of their state-focused pages and on their amazing website. It is full of the greatest documents to share with doctors, therapists, and nurses. I later joined their large international Facebook page. Soon, I was asked if I'd like to volunteer. I was already so incredibly impressed by the organization that I jumped at the chance. After some pretty intense training (I LOVE how they make sure we are trained for almost anything that can happen!) I started in my new role of screening and accepting new members, as well as some moderating. Everyone I volunteer alongside wants nothing more than for everyone with Dysautonomia and its counterparts to feel like they are part of a loving community where they can be supported through all this devastating disorder can do. They are the BEST!

4

Volunteer

Rating: 5

I stumbled upon Dysautonomia Support Network a couple years after my initial dysautonomia diagnosis. At that point I felt lost, alone, and didn’t know where to turn. I joined as a member, not knowing what to expect and suddenly was surrounded by a brand new support system where everyone ‘got it’ and if I had a bad day there many people checking on me and sending best thoughts my way. I eventually joined the writers club and then began volunteering. Now I serve on our National Leadership Team and am the Medical, Clinical Liaison Team Coordinator as well as a Co-Leader on the Advocacy Team.

4

General Member of the Public

Rating: 5

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

Review from #MyGivingStory