DSN has been instrumental in helping our family learn how to manage Dysautonomia. Thank you for the great resources and support!
I am a husband of a wonderful wife that has Dysautonomia and other chronic conditions. The Dysautonomia Support Network (DSN) works to empower and support those with Dysautonomia through a wonderful and thriving community! I will be forever grateful to everyone that we have met along the way. DSN keeps providing up to date information like there amazing website update to continue to help the community. Thank you DSN
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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!
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. They have taught me to live my best life by giving me the tools and support I needed. There website is full of lots of accurate information that has been priceless in my journey with Dysautonomia!
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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.
Volunteering with DSN helped me get back into working while being supported by a group of folks who understand dynamic disability. Highly recommend volunteering!
Facilitates a great community nationwide for those dealing with chronic health conditions. Is an amazing source of advocacy for a community often overlooked. Such a well run and thoughtful organization!
As a patient living with Dysautonomia, I understand firsthand the challenges and uncertainties that come with this complex condition. It's a journey filled with ups and downs, but one thing that has truly empowered and fulfilled me is my experience as a volunteer for the Dysautonomia Network. Being part of this incredible organization has allowed me to make a meaningful difference in the lives of others facing similar struggles while providing me with a strong sense of purpose and connection.
The Dysautonomia Network is more than just a support group; it's a lifeline for individuals like me who are navigating the often overwhelming world of autonomic dysfunction. What makes volunteering for this organization so exceptional is the sense of community it fosters. When I first joined as a volunteer, I was welcomed with open arms by a group of passionate and empathetic individuals who understood the daily challenges that Dysautonomia presents.
One of the most fulfilling aspects of volunteering for the Dysautonomia Network is the opportunity to provide support and encouragement to fellow patients. Sharing my own experiences and insights, and hearing from others, creates a powerful sense of solidarity. I've been able to offer guidance, lend a listening ear, and provide comfort to those who may be feeling isolated or misunderstood. It's incredibly empowering to know that I can make a difference in someone's life by simply being there for them.
Another vital role that the Dysautonomia Network plays is raising awareness about Dysautonomia within the community and the public. Volunteering has allowed me to be part of advocacy efforts, organizing awareness campaigns, and participating in events to educate healthcare professionals and the general public about this often under diagnosed condition. This work is essential in improving diagnosis rates, increasing research funding, and ultimately enhancing the quality of life for Dysautonomia patients worldwide. It's easy to feel overwhelmed by the daily challenges of this condition, but by taking an active role in the Dysautonomia Network, I've gained a newfound sense of control and purpose. I've become more informed about my own health, developed advocacy and communication skills, and forged meaningful connections with others who share my journey.
Charisma Tovar
The Dysautonomia Support Network (DSN) gave me purpose during one of the most challenging periods of my life. At the time, I was unable to work due to worsening chronic health issues. DSN gave me a renewed sense of purpose through meaningful volunteer work, enabling me to help others while navigating my own struggles. DSN is a wonderful place to volunteer- everyone is accepting and accommodating. The community formed by this organization is incredibly supportive.
Aside from personal growth, I've also gained so much knowledge about dysautonomia and my own health conditions through DSN's outstanding content and resources. The volunteer team strives to create quality educational content, share resources, and empower those affected by dysautonomia. It is beautiful to see the positive impact DSN has on the dysautonomia community.
DSN has helped me thrive and learn new skills that have helped me find an accommodating job! When I first started volunteering, I was really struggling neurologically, but they gave me the space to rehabilitate. Then, as I started getting more involved, I learned new skills. A few years later, and now I have my dream job, working remotely with a flexible schedule, all with skills learned at DSN. Their supportive environment has helped me so much!
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DSN is a wonderful organization. The website update is top notch and there are tons of helpful, medically accurate information on it now. I also appreciate the only support groups and now the zoom meetings once a month! The provider map is also very helpful.
I got POTS from covid and didn’t know anyone with it and this organization is thriving to teach about dysautonomia and help find cures. POTA gets in the way of everything in my life and this nonprofit helps tremendously.
DSN is a fabulous organization that strives to provide information and education to everyone. As in the name - the main focus is SUPPORT! DSN supports patients and providers with resources to navigate the complex disorders involved with dysautonomia.
I am encouraged by others, helped by many who share similar experiences and trials, living with this illness and having this group aids in the daily fight we all strive to live.
The information they have shared has made it possible for me to find a doctor who is actually aware of my symptoms and how to treat them.
Dysautonomia support Network, provides resources and handbooks With information that you can use to improve your own life. They also have online community Clubs where are you can talk about struggles or even hobbies. Being a part of DSN has helped me through many of my struggles throughout the years.
Dysautonomia Support Network has helped me so much. Their website has given me so many great tools to share with my doctors and family. Thank you for the community you provide.
The network helped me find the doctors I needed to get the correct diagnosis I needed for treatment. I have Autonomic Neuropathy as a result of Lupus which can be extremely hard to diagnosis and receive treatment for
I have been volunteering with DSN since 2018 and developed a second family with our community. Our commitment is to create a community that empowers and supports those who are impacted with dysautonomia to live their best lives. I work with some amazing professionals on our Education and Awareness Team who are dedicated to helping our community. Their selfless service and dedication are admirable. Their ideas and gifting help make a difference in everyone's life. We could not do this without them!
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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.
DSN has been instrumental in supporting me since being diagnosed and now living with chronic illness. Their website is filled with wonderful resources, Thanks DSN!
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Hello my name is Shawn Sandquist. I originally joined Dysautonomia Support Network to find others like me to have that support system to work with others I also was looking to become a volunteer. I ended up joining the volunteer team. I have learned that this organization nation puts their members 1st they care about one another they support one another. They're there for one another. All the way from the members to the volunteers to the moderators to the admin's etc. They care about each other. This organization is more than just an organization it's more than just a support network it's more than just an outreach it's a family. A family that has each other's backs when we need a most.
This organization was so helpful in connecting me with doctors and others suffering from the same disorder as me. It has blessed me by helping my find community and support through my struggles with illness.
What an incredible group of passionate and dedicated people working to support those with the diseases of Dysautonomia. I'm honored to be a part of this organization!
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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.
A great group where someone is always around to answer questions or to just listen to your story. They offer great ways to improve your lifestyle and ways to cope
This group has done an amazing job of spreading awareness about Dysautonomia, specifically POTS and Ehlers Danlos. Raising awareness is definitely the key to helping others get diagnosed easier and hopefully getting the help they need.
This has been an amazing organization for me and my family! Ever since I began volunteering we have learned so much about Dysautinomia. I have also gained friends through this organization with other people in my group.
DSN is working hard to reach those suffering with autoimmune disorders. They help people know they are not alone and help advocate for recognition of their conditions. Keep up the great work!
I love this org so much! It has helped me so much spread awareness within my org and help others understand my drive.
DSN works to empower and support those with Dysautonomia through a wonderful and thriving community!
We are all about supporting others seeking support and a community for anyone diagnosed with Dysautonomia, or seeking a diagnosis.
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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!
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.
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!
My daughter suffers from Dysautonomia and DSN has been an amazing resource for us and meeting lots of new people.
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.
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
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
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!
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.
DSN provides much needed information to people suffering from these misunderstood diseases. They are educating doctors and patients. Their help is immeasurable.
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.
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.
The information I gained through dysautonomia network helped me push for a correct diagnosis and, after 5 years of misdiagnoses, finally start treatment.
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!
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.
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
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