Dysautonomia Information NetworkPO Box 10057Swanzey, NH 03446Email inquiries to email@example.com
The Dysautonomia Information Network (DINET) is an all-volunteer 501(c)(3) nonprofit organization dedicated to providing support for people living with dysautonomia. and providing greater awareness & education to the medical community. We provide information on our website and our quarterly newsletter. Information about dysautonomia and POTS is distributed to medical practices and support groups across the United States. Our moderated online forum offers support for patients and caregivers, providing a place to meet and discuss issues related to dysautonomia and chronic illness with others who understand the struggle. Our team of Medical Advisors answer questions from our members through our newsletter and also provide DINET guidance in offering evidence-based medical information on our site. Our volunteers answer questions from readers on our forum, our site, and our Facebook page. We also provide a database of physicians specializing and treating people with dysautonomia as well as a list of support groups. We hope you will explore, meet a few people and decide to become a member. We are here for you.
DINET relies on donations & volunteerism to continue the important work that we do. To read more about the ways you can support DINET, please see our Get Involved page.Board of Directors:President: Ellen DriscollTreasurer (open position) Questions, please contact: firstname.lastname@example.orgSecretary (open position)
General Member: Chelsea GoldsteinGeneral Member Trudi Davidoff
General Member Hallie MacDonaldMeet 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 stepsons, 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, 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 every day 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, short, slow 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. As President, Ellen is primarily responsible for the administration of the DINET organization, including the financial and non-profit status requirements. She also serves as the Managing Editor of the quarterly newsletter. Ellen may be reached at email@example.com
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 by 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 traveling. If you would like to be considered as the subject of a future Meet the Member column, please email Chelsea at firstname.lastname@example.org
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 in 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.
Hallie MacDonald, General Member
Hallie lives in Rhode Island with her amazing daughter and her kittie. She recently started a small business selling her original art and embroidered original sketches. Hallie brings both her creative and administrative background to her work with DINET. She entered the world of dysautonomia when she was thrust into the role of caretaker at a young age when her mother became ill. Hallie became symptomatic during her pregnancy spending the bulk of that time unable to stand for more than a minute or two. She now says that she has a new understanding of what patients go through after experiencing it herself. Luckily her symptoms went away after she delivered her healthy baby girl, but Hallie finds a renewed dedication to educating people she meets about dysautonomia.
Hallie works on special projects for DINET and helps the board with administrative and website projects.
Lisa Burgess, Volunteer Coordinator
Lisa is a 42-year-old mother of a son and daughter who are in their early twenties. Lisa is also a nanny to her two-year-old granddaughter. Lisa had a 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 changed 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. To reach Lisa to discuss volunteer opportunities, please email her at email@example.com
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. For information about our social media pages, email DINETSocialMedia@dinet.org
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 weekends when she comes home to eat and do laundry. For information about our newsletter, please contact the newsletter staff through the firstname.lastname@example.org mailbox.Katherine Munson, Forum AdministratorKatherine holds an 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. For information about our forums, please contact Dinetforums@dinet.org