• About Us

    The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization.

    DINET's mailing address:
    Dysautonomia Information Network
    PO Box 10057
    Swanzey, NH 03446
     
    Board of Directors:
     
    President:            Ellen Driscoll, ellen.driscoll@dinet.org
    Treasurer           (fiscal agent) Ellen Driscoll, ellen.driscoll@dinet.org
    Secretary             (open position)
    General Member: Chelsea Goldstein, chelsea.goldstein@dinet.org
    General Member  Trudi Davidoff, trudi.davidoff@dinet.org
     
     
    For general questions about the dinet.org site, please contact webmaster@dinet.org
     

    Meet our Board of Directors and Just a Few of our Volunteers..

    Ellen Driscoll, President, Managing Editor

    Ellen lives in NeEllenDriscollBioPic2017.jpgw 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. 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 can be reached at ellen.driscoll@dinet.org


     

    C. GoldsteinBioPic.jpg

    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. If you would like to be considered as the subject of a future Meet the Member column, please email Chelsea at chelsea.goldstein@dinet.org


     

    Trudi2017Q2_TrudiDavidoff.jpg Davidoff, General Board Member, Writer for DINET's Dysautonomia News

    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.  Trudi can be reached at trudi.davidoff@dinet.org

     

     

     


    lisaBurgess.JPGLisa 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. To reach Lisa to discuss volunteer opportunities, please email her at volunteers@dinet.org

     


    LaurenMlackBioPic.jpgLauren Mlack, Social Media Coordinator

    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 Pettijudith.JPGbone, Newsletter Editor
     
    Judith 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.  For information about our newsletter, please contact the newsletter staff through the webmaster@dinet.org mailbox. 
     
     
     

     
    Katherine Munson, Forum Administrator
     Katherine 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.  For information about our forums, please contact Dinetforums@dinet.org