DSN National Leadership Team

​Our amazing volunteer leaders work collaboratively with volunteer admins and community leaders around the country to run this patient-focused organization while living with or caring for a loved one with dysautonomia.

National Regional Advisor, Shannon

Shannon lives outside of Toledo with her husband, dog, and three cats. She has worked in various sectors as an advocate and was a general manager of a large retail store in her professional career. Two of her three children were diagnosed with dysautonomia and Shannon became a full-time caregiver. Looking for support, she found DSN and shortly after became a volunteer. During her journey, she has also become a patient and was diagnosed with POTS, Ehlers-Danlos Syndrome, and several autoimmune disorders. In her free time, she enjoys spending time with her kids, being outdoors, and traveling with her husband. 

Volunteer Coordinator, Emily

Emily lives in Maine with her 2 furbabies, her parents and brother, and the family dog. Emily became a part of the DSN team in June of 2016, and though the ride has been short so far, it has been wonderful. She has POTS, EDS, and CRPS/RSD, as well as many other comorbidities starting when she was 15. She has a job doing data entry and reviewing books, which she can do from the comfort of her own home or bed. She enjoys writing, knitting, reading, and getting lost on Netflix. Connecting with this group gave her purpose in her life as well as learning new skills, and refining old ones. Meeting all kinds of wonderful people has been the best part of joining DSN, both as a member and a volunteer.

Social Media Manager, Tiffany

Tiffany lives with Maine with her fiance' and their 3 daughters. Tiffany grew up with a handful of complications but it wasn't until she was in her 20s when she finally was diagnosed with POTS Syndrome. She has EDS, Raynauds, MCAS, and Meniere's. After working in the healthcare field her illnesses forced her to reevaluate her career and she found her love of marketing. DSN has given her the opportunity to help others and to use her marketing and social media skills. When she isn't working you can find Tiffany outside raising chickens, writing in her journal, and going on adventures with her family.

Advocacy Team Coordinator, Leslie

Leslie lives in Delaware with her service dog Bryn and her grandmother, Olive. She has her bachelors of science in nursing with experience in critical care and hospice. In 2014 her world came crashing down with uncontrollable passing out, multiple head injuries and intractable migraines. Through her journey to determine what was going on, she learned she had dysautonomia and all of a sudden, found herself learning how to manage multiple chronic illnesses. Since then, she has been on a quest to learn how to better listen to her body, work on self-care, and work hard to rehabilitate her body. She is thankful to have an excellent medical team that encompasses both mainstream medical as well as alternative medicine and has seen some neurological improvement through functional neurology. Leslie is passionate about dysautonomia awareness, self-advocacy, and encouraging. No one should ever have to go through this alone. She firmly believes everything happens for a reason and is thankful for the ability to volunteer with DSN and the platform it provides.

Lifestyle Clubs Regional Leader, Sarah

Sarah identifies as an intellectual, nerdy, spiritual, Jewish, girly-girl. She loves accessories and will gladly attend any event that’s an excuse to dress-up.  Shiny, sparkly, glittery things make her smile and giggle.  Her craft projects and her general style both reflect these loves.  She is also a self-proclaimed math/science nerd with a Bachelors in Physics and a Masters in Geoscience.  She likes discourse and debate, deep conversation, and being challenged to think about new things or old things in new ways.  These characteristics show themselves in her posts in the Mindfulness Club on a regular basis.  Sarah has been an advocate for people with disabilities since childhood when your younger brother Joshua was born.  Since her diagnosis of Dysautonomia, Neurocardiogenic Syncope, and hypermobile Ehlers Danlos Syndrome; she has become an advocate for herself and others with these conditions.  Professionally, Sarah is a math and science educator.  She teaches mostly in settings mostly outside typical classrooms and will readily share her passion for a subject with you outside of work.  She brings this passion to her roles in DSN as a moderator in the Pennsylvania support group, a member of the Education and Tech Teams, and the regional leader for the Lifestyle Clubs.

US Purple Regional Leader, Rachel

Rachel has been volunteering with DSN since 2014. She lives in Houston, TX area with her parents and her dog. She is a part-time student and also enjoys reading and crafts. Rachel has been diagnosed with dysautonomia, gastroparesis, migraines, PCOS, and other health issues. Rachel enjoys volunteering with DSN because she likes spreading awareness and education about dysautonomia and its comorbidities. It is enjoyable to be able to help people in their chronic illness journey.

US Yellow Regional Leader

Bio pending.

US Blue Reional Leader -

Bio Pending

US Red Regional Leader -

Bio Pending

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