Jan 17, 2012

Calling All POTSies! Volunteers Needed for a New POTS non-profit!

Shhh.... I am letting you all in on a little secret.  I am launching a new national non-profit organization with some of my POTS friends and their families.  The primary goal of the organization is to raise money for research into the causes and better treatments for the various forms of POTS - and to someday find a cure for every form of dysautonomia.  We also intend to work with all of the existing POTS and dysautonmia related organizations to form an umbrella group that can advocate for more government and private funding for dysautonomia research.

We aren't announcing the name of the group and going public yet because we want out launch to be BIG, so we can get media coverage and use the launch as a fundraiser.  We want our organization to be running smoothly before we launch, so we need to recruit volunteers to help us with certain projects.

Many of these things can be done from home on your laptop or with a phone.  We understand that many of our volunteers will be POTS patients, so we are trying to adapt the way we run our organization so that even those patients who are bedridden and hanging out on Facebook all day can contribute to the cause.

Please read through these volunteer projects and let us know if there are any you are interested in.  If you have any questions about these projects, or you have other ideas or something you'd like to volunteer to help with, please e-mail me at potsgrrl@gmail.com.  Be sure to list the specific project # you are referring to.

And stay tuned for our official launch in the coming weeks...

Volunteer Project List

Project 1 – (looking for one or two volunteers) Find out which regional/local POTS/dysautonomia support groups already exist – ask around, look on Facebook and Google, create a list of regional groups and obtain name and contact info for person to reach out to in group. Also try to find out when/were they meet, if at all. See Sjogren's Syndrome Foundation support groups website for an example before you start: http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups

Here are a few regional groups we know of:
NY POTSies – serving the NY/NJ/CT tri-state area
Contact Name: Lauren Stiles
Contact Info: laurenstiles@gmail.com
Notes: Group is based on Facebook. Members meet informally/socially a few times per year.

Texas Association for Dysautonomia Awareness (T.A.D.A.)
Contact Name:
Contact Info:
Notes: Group meet regularly and has speakers from the medical community give presentations and seminars.

STOP POTS Virginia
Contact Name: Claire Foust Martin
Contact Info: stoppotsvirginia@gmail.com
Notes: Group is web based (Facebook and blog) at this point, but meetings are encouraged amongst members.

Tuscon POTS Group
Contact: Coppelia Tarantal (on Facebook)
Contact Info:
Notes: Group is web based and has social gatherings several times per year.

Project 2 – (numerous volunteers needed) If there is no regional POTS/dysautonomia support group in your area, you can start one! Find other two or three people who have POTS in your state/city/region of the country. Form a Facebook group or an e-mail list for these people. Tell us the name of your group, the region you serve, the contact info (name, phone/e-mail) for the person in charge and when/where you meet, if you plan to meet in person at all. Groups may be very small at first, but we want to include all of the regional support groups in a directory so we can ask POTS doctors to forward newly diagnosed patients to the local groups. Eventually there will be more people reaching out to the local groups. The model we are using for this is the one used by the Sjogren's Syndrome Foundation. Check out their list of local support groups for inspiration:

Project 3 - (looking for one or two volunteers) Review American Autonomic Society listing of physicians, DINET list of physicians. Jodi Rhum's list, TDC's list and any other list of POTS doctors you can find. Ask other patients to recommend good POTS doctors. Contact each physician's office to: (1) determine if the contact info is accurate and up to date, and (2) ask if they specialize in diagnosing and treating POTS. If the info is out of date, try to find accurate contact info and reach out to them. If they say they don't diagnose or treat POTS/dysautonomia, cross them off the list. We don't want to be sending people to doctors who don't want to deal with POTS patients. Compile a new up-to-date list of POTS doctors with name, address, phone, fax, e-mail and specialty (Neurologist, Electrophysiologist, etc.)

Project 5 – (looking for one volunteer) Make a video of different POTS exercises. No commentary, other than this is how to do the exercise. Explain modifications for bedridden patients or wheelchair bound patients if possible. Look presentable and speak clearly. We only want good quality video footage. We want everything about this non-profit to be very professional looking. Even better if you have a doctor, PT or a trainer showing you how to do the exercise. Rowing, recumbent bike, reclined workouts, and pool exercises would be great to show.

Project 6 - (looking for one volunteer) Make a video showing and explaining POTS counter maneuvers to help with orthostatic intolerance. Explain modifications for bedridden patients or wheelchair bound patients if possible. Look presentable and speak clearly. We only want good quality video footage. We want everything about this non-profit to be very professional looking. Even better if you have a doctor, PT or a trainer showing you how to do the exercise.

Project 7 – (looking for 6-12 volunteers per year) Volunteer to run one of our monthly international Skype meetings for POTS patients. We also need to write up simple 'ground rules' for participation and we need to have a simple training program for people to do before they run a meeting, so they know what to do to run a Skype meeting and so we know they understand the ground rules and how to use Skype.

Project 8 – (looking for 6-12 volunteers per year) If you have a doctor who is a POTS expert, we want you to ask them to join us for an “ask the expert” web chat. We will give them all of the questions from the patients in advance, so no surprises, and we will do our best to filter out the dumb questions and repetitive ones. We expect each web chat to last about 30-60 minutes. We will use Skype for the web chat, and we will type up a transcript for the benefit of patients who were unable to attend the live chat. We need:: (a) you to help us find doctors willing to be the expert (b) someone to collect the patients questions in advance, host the Skype chat and ask the questions to the doctor and (c) someone to type up a transcript of the chat, or to record it, so we can put it on our website for other patients to read.

Project 9 - (looking for one volunteer) Newsletter Coordinator – we want to produce a semi-annual newsletter. Spring/Summer and Fall/Winter each year. This will be an online newsletter to start. We need someone with experience laying out and coordinating the production of a web based newsletter. You will be working with text, photos, and graphics. We want a professional layout that is consistent in each edition of the newsletter. The coordinator will also help manage the content of the newsletter and will help organize the authors, editors and photographers who are also working on the newsletter.

Project 10 (looking for about 10 volunteers) We need people to write articles and regular columns for our newsletter. Story ideas: Research Update, Meet the Expert (bio of a POTS doctor), Meet the Patient (bio of a POTS patient), Events Calendar, Ongoing Research Trials Needing Participants, Treatment Spotlight (discussion of a POTS treatment and how it works).

Project 12 - (looking for about 3 volunteers) A few people with medical expertise are needed to compile a listing of all drugs commonly used to treat POTS. We want to provide a list of the drugs and a link to the drugs MedlinePlus page (example: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682549.html). To help get you started, a listing of some of these drugs is on the POTSgrrl blog (http://potsgrrl.blogspot.com/p/pots-medications-and-treatments.html), and also found in the journal articles linked to from the POTSgrrl blog (http://potsgrrl.blogspot.com/p/medical-journal-articles-on-pots.html).

Project 14 – (looking for one volunteer) Volunteer needed to assist with preparation of our annual reports. Experience with this is required. Ideally this volunteer will be an accountant/CPA.

Project 15 - (looking for one volunteer) National Public Relations Coordinator. Experience pitching stories to major media outlets and responding to media inquiries is required. We would like this person to design a press kit for patients to use to encourage local media to do human interest stories on POTS patients. Contacts within the television, print and online media industry would be helpful.

Project 16 - (numerous volunteers needed) We need POTS patients willing to volunteer to pitch their local media a news story about POTS, to help us spread with word about POTS and our organization's work. We will provide a press kit to assist you in pitching the story and how to respond to reporters questions.

Project 17 – (one or two volunteers needed) We need a National Coordinator or several Regional Coordinators for the “Lend a Hand Program.” When we hear of POTSies in need of something specific, like a wheelchair, or more general things, like help with preparing meals, mowing the lawn, or financial assistance to pay for basics like housing, food or medical care, we would like to have a person at the organization who will reach out to local churches/synagogues/community centers/firehouses in that person's hometown and ask if there is help available for the person in need. Many people would never ask for help themselves, but there are many great hometown resources out there, and if it means we have to ask on their behalf, we will try. Many times the donations are anonymous or the recipient can remain anonymous if they want to. If the program is very successful or there is a large demand, we can have several coordinators, and we can break up the work by state or by region of the country. This position would be ideal for someone with a background or an interest in Social Work.

Project 18 – (about 4 or 5 volunteers needed) We need a few volunteers to work together to compile a list of companies who provide products and services that POTS patients regularly use. For example, makers of medications used to treat POTS, compression stockings, tilt table manufacturers, saline manufacturers, ab binder manufactures, vitamin manufacturers, Nunns tablets, Thermotabs, Gatorade, pickle makers and the company that sells that pickle juice drink, sea salt companies, wheelchair companies, rowing machine/recumbent bike companies, etc. We need the address to write to for each company, preferably the marketing/sales department or if they have a charitable donation office, and if all else fails their Public Relations department. If possible, we want a contact person's name and title, and a phone number too. After we have compiled a big list, we will start writing to these companies and asking for donations. Ideally, the list will be compiled into an Excel spreadsheet with the following columns: Salutation (Mr./Mrs./Dr.), First Name, Middle Initial, Last Name, Title, Company/Division, Address Line 1, Address Line 2, City, State, Zip, Phone, Fax, Website, Name of Product

Project 19 – (one volunteer needed) We need someone with professional graphic arts experience to help us design our corporate look. We need a savvy logo/mark and letterhead. We may also need web based graphics assistance.

Project 21 – (four volunteers needed) Resident Photographers – we need quality stock photographs of POTS patients and doctors in action for use on our website and in our printed materials. Photos should be in a high resolution digital format. Attribution/credit for photos will be given. Photo topics we need are: doctor caring for a patient, parent caring for a child with POTS, teenagers with POTS, adults with POTS, men/teen boys with POTS, people “standing up” to POTS, artistic/abstract photographs of IV bags, medications, hospital rooms, equipment used in testing POTS patients, etc.

Project 24 – (one volunteer needed) – We are looking for a good PT or a physician to write a good physical therapy or exercise guide for POTS. A stipend/grant may be available for this work.

Project 27 - Get POTS on TV – we are looking for people with connections to help us get stories about POTS on popular television shows like Dr. Oz, The Doctors, Royal Pains, Grey's Anatomy, House, Mystery Diagnosis (again), True Stories of the ER, etc. Note – Lauren Stiles has two contacts with Royal Pains she can put you in touch with to start. If we don't have anyone with a connection to these shows, we will need one volunteer to draft up letters than we can send to all of these shows producers pitching a story idea about POTS to them. This volunteer will work with our National Public Relations Coordinator on this project.

Project 28 – (we are looking for 3 or 4 volunteers) - POTS in the Classroom - we are looking for elementary and secondary education teachers to help us design materials for age appropriate lesson plans about POTS. These lesson plans could be given to teachers in schools in which a student has been impacted by POTS, if the parents and student are comfortable sharing it with them. We would also love to have resources for Science Fair Projects on POTS on our website. We would even like to offer an annual prize for “Best Science Fair Project on POTS.” Kids from around the country could enter science fairs and send us copies of the materials they used, a written summary of their project and photos of the presentation of their projects (poster session or a video of a speech they gave about their project). We then review all of the entries we receive in one school year and give an award to the student who gave the best presentation. We can divide up the contest by age K-6, 7-9, 10-12.

Project 29 (one or two volunteers) - School Liaison - we are looking for an attorney with experience in education and/or disability law or a parent who has had to work with their school district to coordinate home schooling, modified scheduling and/or accommodations to help keep children with POTS in school. The goal of this program is to serve as a support for parents who are having a hard time getting their schools to provide the services they need to ensure their child's educational and social development needs are being met. Our organization will not directly contact a school, but will attempt to provide constructive suggestions to parents on how to achieve the best results for the child.

Project 30 – (three or four volunteers needed) - Online Auction Coordinators – once our website it up and running, we plan to hold online auctions from time to time, to raise funds for dysautonomia research. Our Online Auction Coordinators will gather interesting items to auction from donors, identify fair minimum selling prices for each item, create brief written descriptions of the item being auctioned, take photos of the auction items, ensure delivery to the winning bidder, and make sure that thank you letters are sent to individuals and businesses who have donated to the auction and those persons who have purchased items from the auction. Our auction coordinators will work with the National Public Relations Coordinator to gain exposure for our online auction events. This can be done from home.

Project 31 – (numerous volunteers needed) – Luxury Auction Volunteers – if you have celebrity memorabilia, or have a connection to someone who can get you some, if you have connections that can get us VIP backstage passes to concerts or tickets to sporting events, if you have a connection to someone willing to donate luxury goods (Coach purses, real jewelry, vintage wines, artwork, sports memorabilia, etc.) we want to hear from you! We are looking for unique items and experiences for our online auctions. Golf foursomes at exclusive country clubs, dinner with a celebrity or well known corporate CEO, small plane rides or helicopter rides, fishing charters, timeshare vacation weeks or rentals, cruises, etc. Travel agents are a good connection to help us get donated trips, plane tickets, and cruises.

If there is some skill or talent you would like to contribute to our organization that is not listed here, please let us know.  If we are going to raise millions of dollars per year for POTS research, we need all the help we can get!


  1. I got information about you from a nurse I work with at Mather Hospital in port Jefferson, NY. I was able to bring that infomation to the T.A.D.A support group in Dallas, Texas. They are wonderful people and are working hard to spread the word. Connecting the 2 together will certainely bring POTS awareness to another level.

  2. To "Anonymous" who knows the nurse at Mather Hospital - please send me an e-mail if you see this (potsgrrl@gmail.com). I am very curious who knows about this POTS Grrl page at Mather. That is one of the few hospitals on Long Island that I haven't been to! :)

    I have heard of T.A.D.A. and I have several online POTS friends from Texas who have been their their presentations and meetings. They seem like a well-informed and very organized group. We are compiling a list of regional POTS/dysautonomia related organizations and we consider them to be one of the best regional groups. It would be great to take what they are doing on a state-level and bring it to other states and eventually a national level.

    Thanks for posting!

  3. Very exciting...I want to think about it...but I am a veteran teacher of ten years who had to leave her loved career because of POTS. I think id like to tackle the lessons! Id love to do a play! :)