How You Can Help
Medical disclaimer

Together, we can fight dysautonomia. The Dysautonomia Information Network (DINET) raises awareness of autonomic nervous system dysfunction and promotes dysautonomia education, support and networking. We are working hard to make the world a better place for dysautonomia patients, but we can't do it without your help. Please donate to DINET and take a stand against dysautonomia today.

Donate

The Dysautonomia Information Network (DINET) is a 501(c)(3) non-profit organization run completely by volunteers. No donation is too small and every one is greatly needed and appreciated.

Donate by online check, debit card or credit card through Network for Good:



DINET is a 501(c)(3) organization. Donations are tax deductible according to IRS regulations.

Or donate by check:

Make checks payable to DINET and mail to:

DINET
P.O. Box 55
Brooklyn, MI 49230

If you shop on the web, there is another way to donate. By registering with iGive, a specified percentage of your purchase will be donated to DINET. This service is free to you and adds no additional cost to your online purchase. There are well over 400 well-established online vendors who are affiliated with iGive. They include Apple Computer, Avon, Barnes & Noble, Best Buy, Dell Computer, Discovery Store, eToys, Expedia, Gap, HSN, L.L. Bean, Lands End, Orbitz, Priceline, Travelocity, QVC, etc. To see the full listing, click here: http://www.igive.com/html/malltour.cfm

In order for your purchase to get credited to DINET, you must have started your purchase process via the iGive website. Even if you shop online only once, your donation will be added to those of every other DINET supporter. If you're going to shop online anyway, it's the easiest donation you'll ever make! If you have questions about the iGive service, please see the "Frequently Asked Questions" link on their site: http://www.igive.com/html/sitemap.cfm Once the link opens, go to the section marked "Tools for You" and then open the link labeled "FAQ".

To join iGive, use the following link, as it will automatically set up DINET as your recipient: http://www.iGive.com/html/refer.cfm?memberid
=279907&causeid=25053

We appreciate your support!

Become a volunteer!

DINET has several volunteer positions available. Please email staff@dinet.org if you are interested in one of the following positions:

Find press releases
If you like to research and know how to use the Internet this may be the position for you! Help us find recent, dysautonomia-related press releases to include in our quarterly newsletter.

Grant Searcher
We could use help finding grants for which we may qualify. If you can help with this, please let us know.

Help build our "Assistance" page
Can you assist us in finding web resources that will help others for our "Assistance" page? If so, let us know!

Help build our Physician Finder!

If you know of physicians that have a special interest in any type of dysautonomia, please submit their contact information to us at: http://www.dinet.org/physician_finder.htm

Or write to:

Dysautonomia Information Network
P.O. Box 55
Brooklyn, MI 49230
United States

Share your experiences in The Patient’s Voice!

The Patient’s Voice is a newsletter column where patients can express themselves and write about experiences relating to dysautonomia - both positive and negative. It is a place to share medical experiences, suggestions, short stories and poetry, etc. Send contributions to: staff@dinet.org  

If you'd like to volunteer your assistance in any other way, please let us know.

Meet just a few of our current volunteers:

Rachel Lundy

Rachel Lundy enjoys her life as a wife and stay at home mom.  In 2002 she married a wonderful man, Will.  They have two children, William and Adelaide.  These precious children brighten Rachel’s days while simultaneously wearing her out!  She wouldn’t trade them for anything.  As energy permits, she has fun blogging, reading, crocheting, and scrapbooking.  Rachel is a graduate of Alaska Bible College and received her bachelor’s degree in Biblical Studies and Christian Ministry.

Rachel has had health problems since she was a child, and over the years her diagnoses have come to include: POTS, NCS, Gastroparesis, and several sleep disorders. Doctors believe that the root cause of her dysautonomia is a Mitochondrial Disease.  Her symptoms have continued to grow worse, making daily life challenging.  She is thankful for a loving, caring family, and for the Lord her God, in whom she finds great comfort, strength, and hope.

Annette - Newsletter Columnist

Annette lives in Delaware with her wonderfully supportive husband of 20 years, her daughter and son and their dog Ginger.  She was diagnosed with POTS eight years ago, but her symptoms began 12 years ago after the birth of her second child. She has also developed additional atrial arrhythmias (e.g., atrial fibrillation, atrial tachycardia, inappropriate sinus tachycardia) that have made finding medication to treat her POTS a challenge. Prior to her POTS diagnosis, she worked as a Human Resources professional for ten years and also enjoyed singing professionally when she could. After the birth of her daughter, she left the corporate world to stay at home and teach Kindermusik and piano until POTS forced her to stop working.  She is now pursuing a lifelong dream of becoming a freelance writer, something she can do from home.  She loves to read, play the piano/sing (when able), and write. She is currently working on several children's stories and a book of reflections on how chronic illness affects our faith.

Yogini - Publication Researcher & Link Checker

Yogini has had POTS for almost 6 years following a virus.  After a rough first year and a lot of trial and error with medication and exercise, she has steadily improved (fingers crossed). At the time she developed POTS, she worked long hours as a corporate lawyer in a NYC law firm. After becoming chronically ill, she decided to switch to a flexible schedule and eventually to take a leave of absence. During this time, she grew to love yoga and meditation...it didn't hurt that they helped with her POTS!  She now works from home as a consultant. Other than yoga, her interests include travel, making beaded jewelry, cooking (eating) and independent films. 

Stephanie Basile - Link Checker & Publication Researcher

Stephanie (Steph06) is twenty seven years old and the mother of a beautiful three year old boy, Nicholas. She has been married to her loving, supportive husband, Nick for five years. Stephanie was diagnosed with POTS about two years ago and Dystonia about four months ago. The last couple of years have been very hard for her and her family, but they have learned to take each day as it comes. Stephanie loves spending quality time with her family and enjoys reading pretty much anything that grabs her attention. Recently she has been reading the bible for strength and courage to help her cope with this new way of living. Stephanie is happy to be a part of DINET. Along with her family, DINET has been a wonderful support system. She is dedicated to helping DINET as much as everyone at DINET has helped her.

Jennifer Cook - Publication Researcher

Jennifer Cook (firewatcher) grew up in Georgia, but has lived in Pennsylvania, New Jersey, Washington state and Mississippi. Again, she currently lives in Georgia with her husband and two rowdy boys.  A graduate of the University of the Arts, she is a professional sculptor and illustrator.  Diagnosed with hyper-adrenergic POTS by Vanderbilt University in 2008, she has been symptomatic for most of her life.  An avid reader and certified nerd, she enjoys confusing doctors and working when her health allows it.  If she ever finishes all the artwork she intends to make, it is her intention to go to Medical School and become a Neuro-endocrinologist.

Alexia Anastasia - Fundraiser

Alexia currently lives in Naples, Florida with her husband. She is a recent graduate of Nova Southeastern University where she received her Bachelor of Science degree in Psychology. She is still actively involved in Psi Chi, the international honor society in psychology, and hopes to continue on to graduate school in the near future. Alexia was diagnosed with POTS in 2003 and Joint Hypermobility Syndrome in 2008. In her spare time, she enjoys independent films and music, writing, and traveling.

Staci Friedman - Art Director/Designer

Staci is graduate of the Richard Stockton College of New Jersey where she earned a bachelors degree in Visual Arts with a specialization in Graphic Design. After graduating college in 2002 she moved back to NYC where she lived for a few years. Following her diagnosis with POTS in 2005 she decided she needed to make a big change in her life and moved to Columbus, OH. She is currently still residing there and lives with her boyfriend and her 4 legged-child, her pug "Frankie". Currently Staci works for Victoria's Secret corporate office as a Senior Graphic Designer, and she was lucky enough to find a boss who lets her work from home and take off as many days as she needs to due to her illness. She was also diagnosed a few years ago with EDS. In her free time she watches A LOT of movies, loves to go to the dog park, and enjoys shopping.

Janie Farrens - Volunteer Coordinator

Janie Farrens helps Dinet by coordinating and assisting our volunteers.  She's 36 and has had POTS for 3 years.  Throughout her adult life Janie has struggled with headaches, coat hanger pain, and GI issues.  In 2006, she came down with mono and a few months later was in a bad car accident.  In October of 2006, Janie went to the ER for the first time for tachycardia and near-syncope.  Since then, Janie developed more symptoms including chronic frostbite (pernio), erythromelalgia, chest pain, migraines, nausea with occasional vomiting, burning skin, etc. She also had two hip surgeries in June of 2007 and January of 2008 related to injuries from the car accident.  Janie's dysautonomia symptoms continued to worsen and she had over 40 doctors' appointments from December of 2007 until February of 2009 in order to try to find the cause of her various symptoms.  Finally, Janie was able to go to the autonomic clinic at Mayo in Rochester earlier this year where she was diagnosed with small fiber neuropathy, small bowel dysmotility, and mildly hyperadrenergic POTS.  Janie is still trying to find the best medication regimen, but the POTS treatments she uses on a regular basis include compression hose, high salt and fluid intake, a cooling vest, stress avoidance, and a positive attitude!
 
Janie got married in March of 2007 to her best friend.  He has stood with her through illness, disability, and financial hardship.  Janie's mother also has small fiber neuropathy and has had carcinoid syndrome (a rare, slow-growing neuroendocrine cancer) since she was in her 30's.  Janie has watched both her mother and father bear this illness with grace and amazing courage, and they will always inspire her.   
 
Janie enjoys posting on the Dinet forum as "Thankful," reading a good mystery, petting her two sweet dogs, and being with friends and family.

Julie Gregory - Newsletter Columnist

Julie is formally trained as a marriage and family therapist. She currently "practices" on her family- consisting of Bruce (husband of 25 years) and Mack (age 16), who also battles an autonomic dysfunction. She's a huge advocate for her son and educates others about autonomic dysfunctions. Julie helps her husband run a family decorative concrete business. She enjoys exercising (as she's able), reading, interior design, and spending time with friends and family.

Stephanie Beans - Link Checker

Stephanie Beans from Toledo, Ohio helps keep our website links up-to-date. She also assists DINET by printing and mailing donation receipts.

Rachel Lundy

Forum Moderator

"Flop"

Forum Moderator

Amy Van Der Kamp - Fundraiser

Amy is the proud mother of one son, Blake. She has been happily married to her loving husband, Mark, for 7 years. They live in a small town outside of Des Moines, Iowa. Currently, due to Amy's health, she is taking some time off and staying home. Before that, Amy was a Community/Marketing Manager.

Amy was diagnosed with POTS, NCS, and low blood volume in 2005, and she was given a dual chamber pacemaker in 2004.

Melissa Mambort - Forum Moderator

Melissa graduated from Johns Hopkins University in 2002 and just returned to her native Ohio to begin the MSW program at Case Western Reserve University this fall with hopes of eventually working in patient advocacy.  She lives with her furry feline friend Czar (but hasn’t yet succeeded in teaching him to clean) and has great support from Mom & Dad as well as entertaining stories from her brother who attends Syracuse University.

Melissa has many interests that she tries to keep up with (or hopes to return to when her health permits) including swimming, rowing, running, coaching, riding, cello, piano, singing, musical theater, cooking, writing & reading.  Her faith in God is also very important to her.

Melissa was diagnosed with NCS in 1997, OI/POTS in 2002, and Autonomic Neuropathy in 2005, possibly of viral and/or autoimmune origin. She participated as a research patient at Vanderbilt this past spring.

Katherine Munson - Creator of "Faces of DINET" online photo album

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.

"Faces of DINET" is an online photo album featuring pictures of some of DINET's members.

Jane Bennett - Meet Others Program Leader

Jane is a mother of three. Her oldest child has been diagnosed with POTS for nearly a year.  She lives with her husband of 22 years and family in the Chicago-land area. She is Eastern Orthodox and, with her husband, has supported numerous committees and youth groups over the years within their church community. In addition, Jane also has served as her children’s elementary school treasurer for the past 10 years. 

Jane has a BS in Business/Data Process from Northeastern University – Illinois and a MBA in Information Systems from Dominican University – Illinois.  She is currently an executive for a major nation wide telecommunications company, where she has been employed for 22 years.

Judith Pettibone - 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.

Melanie Oliverio - Proofreader and Advisor

Melanie is DINET's Treasurer, and she also serves as an advisor. Melanie volunteers to proofread the Dysautonomia News. She holds a degree in Business. She is a former bookkeeper who now devotes time to raising her daughter. Melanie enjoys modeling and modeled for the Ferrari/Maserati exhibit at the 2002 Detroit International Auto Show. She traveled with the Auto Show in the 2006/2007 show season.

Nina Wilde - Support Leader/Forum Administrator

Nina C. Wilde attends Temple University, in Philadelphia, where she is a Ph.D. student in the departments of Educational Psychology and Special Education. She has specialized in autism and Applied Behavior Analysis (ABA) since 1986. Nina currently works full time as a Behavior Analyst, serving children 3 to 21 in the public schools.

She enjoys playing with the children she works with every day that she is able. When home, she enjoys fixing things like leaky faucets, and tinkering with light home repairs. Nina also loves gardening when her health and the weather permit.

Nina was diagnosed with POTS and NCS at 32 years old. However, she and her doctors believe that she has had these disorders since birth. Nina participated in clinical research on POTS at the National Institutes for Health in 2001.

Valerie Fenston - Physician Survey Coordinator/Meet Others Program Updater

Valerie Fenston lives in Cortlandt Manor, New York with her husband and three sons. She has had POTS for 7 years. Before developing POTS she was attending college studying to be an occupational therapist. She also operated a family daycare out of her home. She enjoys volunteering in the reading program at her son's school and spending time with her children.

Michelle Sawicki - President

Michelle Sawicki lives in Brooklyn, Michigan with her husband and teenage son. She graduated from the University of Michigan-Dearborn with a degree in psychology, and now works part-time as a reference assistant in a public library. She developed POTS in 1999. Frustrated by the lack of available resources on this disorder, she created www.potsplace.com in April 2002. She then founded the Dysautonomia Information Network (DINET) in 2003. At that time, the POTS Place website contents were merged with the expanded information available through the Dysautonomia Information Network.

When she isn't researching for DINET or the library, Michelle can be found boating, gardening, and spending time with her family. Michelle also enjoys her three dogs, and she breeds and song trains Russian canaries.

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