Our Leadership Team

Volunteer Coordinator

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.

Global FB Community Coordinator, Fundraising Team Coordinator

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. 

Media Team Coordinator

Traci

Traci lives in Florida with her son, dog, and 3 cats. She has a background in teaching and has a love of music. Traci is a singer and plays 6 instruments. She enjoys knitting and tending to her garden. Traci is also a published author.

 

After living most of her life with health problems that everyone around her said were 'made up,' she was finally diagnosed with Ehlers-Danlos Hypermobility Type, POTS, small fiber neuropathy, and Mast Cell Activation Disorder. Suddenly, everything in her life finally made sense. Looking for support, she joined DSN to help others. 

Media Team Manager

Dawn

My name is Dawn. I am an Office Manager/Business Administrator by day, but my true passions are my church and my family. I am mother to Kelly Moilanen, 20 years old, who was recently diagnosed with Gastroparesis, IBS-D, Orthostatic Hypertension, and Inappropriate Sinus Tachycardia. I am Kelly's fiercest advocate and a true believer that everyone needs a voice on their medical mystery tour.

Advocacy Team Coordinator

Brenda

 

Brenda lives in Texas with her husband, service dog Mille, and two other senior dogs. She has an Associates degree in Nursing and plans to further her education. She currently works in endoscopy and has experience in stroke and ER nursing. Brenda has experienced symptoms of dysautonomia throughout her life, however, she was not formally diagnosed until her mid 30's. One year before her dysautonomia diagnosis, Brenda was diagnosed with Chiari Malformation and underwent brain surgery to help correct some of its symptoms. Around the same time, she was also diagnosed with hypermobile Ehlers-Danlos syndrome. Recently, she was diagnosed with mild gastroparesis caused by the combination of these conditions. Brenda is passionate about advocating for patients and their caregivers in acute care settings as well as educating physicians, nurses, and medical staff about the differences in care someone with chronic illnesses requires.

Advocacy Team Manager

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.

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.

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