DSN's 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.

Volunteer Coordinator & Acting Regional Leader for Lifestyle Clubs, 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.

U.S. National Regional Advisor & Fundraising Team Leader, 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. 

Advocacy Team Co-Leader, 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.

Advocacy Team Coordinator, Brenda

Webmaster, Anna

Anna joined the DSN Facebook Group to find community and support while working through health concerns. She later joined the Volunteer Team to find a productive way to help others behind the scenes. In her personal life she enjoys travel, studying history and culture, art, music, and binge-watching TV series.

If you have any issues with the website, please email the Leadership Team and we will fix the problem as soon as possible. 

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