The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization.Contact DINET at: firstname.lastname@example.org or write to:
Dysautonomia Information NetworkPO Box 2642Buffalo, NY 14240
Board of Directors:President: Ellen Driscoll
Vice President: Sarah AbrahamTreasurer (fiscal agent) Ellen DriscollSecretary (open position)
General Member: Chelsea GoldsteinGeneral Member Trudi Davidoff
Meet our Board of Directors and Just a Few of our Volunteers..
Ellen Driscoll, President, Managing Editor
Ellen lives in New Hampshire with her husband Jeff and her yellow lab, Winston. She has a daughter, two step sons, three granddaughters. Ellen enjoyed a long and successful career in newspaper and web publishing before leaving her profession to better cope with her illnesses. Scoliosis was discovered when she was 18, followed by a Lupus diagnosis at 20. She began having symptoms of autonomic failure immediately following her 2nd extensive spine surgery in 2010. Even though Ellen came out of anesthesia with immediate signs that something was wrong, it still took another 3 years before the words dysautonomia, dysreflexia and POTS were mentioned. After discovering DINET and reading other survivor's stories, Ellen began volunteering. She began as Managing Editor of the quarterly newsletter, spent some time as Volunteer Coordinator and, prior to her role as President, Ellen served as Treasurer. She is happy to put her professional skills to use to help DINET thrive. She is reminded everyday that life is sweet by spending time with her family and the loves of her life - her three granddaughters. One of the biggest adjustments has been leaving behind an athletic life and trading in running shoes for a cane, but her work with DINET & new hobbies fill that time and keep her busy. Organic gardening, reading, writing, walks in the woods with Winston, cooking, sewing and an occasional ride on the ATV are all things she looks forward to on good days.
Sarah Abraham, Vice President, Forum Moderator
Sarah lives in Upstate, NY and is engaged to her fiance, Tim, a police officer. She has 3 dogs: a great dane and 2 Yorkies. In her spare time she enjoys spending time with her family and friends the most. She has a degree in Child Development from Empire State and enjoyed coaching cheerleading for many years. While working in the special education field, she began having debilitating migraines and POTS symptoms. Through the persistence of her local doctor, she was diagnosed with hyperadrenergic POTS. She travels to the Cleveland Clinic for treatment and continues to make great progress. Sarah has POTS (hyperadrenergic), Inappropriate Sinus Tachycardia and Chronic Migraine. She also volunteers at a local migraine support group. In addition to serving on DINET's Board of Directors,she is a Forum Moderator and Admin. Sarah is grateful for the opportunity to work with her fellow volunteers and all of our members. These opportunities give her a deep appreciation of how DINET truly seeks to impact and improve the quality of life for its members and is proud to be a part of its mission.
Chelsea Goldstein, General Board Member, Featured Writer for DINET's Dysautonomia News
Chelsea is originally from Maryland, but she has relocated to Ohio to work toward her doctorate in gerontology. She lives with her extremely affectionate cat, Jack who enjoys rides in the car and (sort-of) doing tricks for treats. Chelsea contracted food poisoning and Clostridium Difficile Colitis (C.diff) while completing undergraduate research in a rural area of China. Her gastric ailments were discovered about a year after her return to the U.S., but her symptoms persisted long after treatment. She was diagnosed with POTS at age 22 and her condition worsened for three years until she visited Mayo Clinic. After a month of extensive testing at Mayo, she was diagnosed with hyperadrenergic POTS, Chronic Fatigue Syndrome, Ehler-Danlos Syndrome and gastric motility/absorption issues. After spending most of her early adulthood bedridden and undernourished, her proper diagnoses empowered her to seek appropriate medical treatment in combination with lifestyle change. She remembers how lost she felt in the early stages of her illness, so now she enjoys mentoring newly diagnosed patients. She has been writing the DINET Meet the Member column for several years, and she feels inspired with each story she gets to share. She is excited to be on the DINET board to help further widen the Dysautonomia network of support. In her free time she enjoys belly dancing, meditation and travelling.
Trudi Davidoff, known for creating the Winter Sowing Method, is now turning her knowledge sharing skills to help improve patient care and reduce diagnosis time for dysautonomia. She lives on Long Island, NY with her husband and son, three dogs and a cat. Trudi likes to exercise or dance to music at home every day. She enjoys herb and wildflower gardening and walking at nature preserves and parks.
Lisa Burgess, Volunteer Coordinator
Lisa is a 42 year old mother to a son and daughter who are in their early twenties. Lisa is also a nanny to her two year old granddaughter. Lisa had very successful career in retail for over 15 years and covered a variety of roles including resource manager, HR manager and deputy store manager. Lisa became ill about three years ago. Since then her life has change dramatically. She had a terrible time getting doctors to take her seriously, leading to misdiagnosis and incorrect treatment. She was finally diagnosed with three conditions, ME/CFS, POTS and a Syrinx on her spinal cord. She is currently being investigated for JHMS. Luckily, in the last year, Lisa has seen much improvement in her health and has now reached a point where she is stable for more days than not. Lisa is looking forward to using her knowledge to help grow the community of volunteers and to utilize their skills so DINET can have a strong group of volunteers that can continue to provide assistance, guidance and support to those who need it. I look forward to getting to know the volunteers and to working with the DINET community.
Lauren lives in Cleveland, OH with her wonderful parents and two goldendoodles, Daisy and Riley. She loves cooking, baking, crafting and making metal jewelry in her spare time. When she was little she was always having health issues that would come and go randomly and cause lots of fatigue.Her mom kept pushing for an answer after going to countless specialists. Finally, when she was 12, she had a tilt table test which diagnosed her with POTS. After having to leave public school and switch to online schooling in 8th grade due to her health issues, she is finally feeling well enough, almost a decade later, to attend a local community college. Lauren is currently going to school to achieve a degree in graphic design. She is very excited that she can use her skills to help great causes like DINET.
Judith Pettibone, Newsletter EditorJudith is a parent of two daughters, one of whom has just been recently diagnosed with POTS after a six year long search. She is an Occupational Therapist by training and a professional writer. She is working on a book about The Colorado Boys Ranch and is a regular columnist in her small town paper. Her particular interest lies in the challenges of caretaking as well as in the many issues raised with the medical field and how it treats the chronically ill. Judith lives in Monument, Colorado with her husband, senior in high school daughter and her college-aged daughter on those week-ends when she comes home to eat and do laundry.
Katherine Munson, Forum Administratoratherine holds a M.S. from the University of Maryland in Conservation Biology and Sustainable Development. She works part-time as a natural resources planner for local government on Maryland's eastern shores. Katherine developed pregnancy/postpartum induced POTS with the birth of her first child in October 2002.