Saturday, June 30, 2012

Volunteer Positions for Dysautonomia SOS!

We are on our way!  Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond.  A formal announcement will be coming soon, but we still need help!  If you or any family/friends are intersted in volunteering, please contact us at  Together, we can make a HUGE difference!

Dysautonomia SOS Volunteer Project List
Dysautonomia SOS is a new Non-Profit organization forming to better serve the VA/DC/MD area’s dysautonomia patients, as well as providing materials for everyone online.  We need your help to get up and running, and start improving the lives and treatment options for patients. 

If you are interested in any of the following projects, please email Claire at   Please use the exact project name to identify what you are interested in.  Feel free to tell us about yourself so we can get to know you as well.  Patients, family, caregivers, and friends are all welcome to volunteer!  Thanks for your interest and support in making this a success!

Physician Listing Coordinators:  Update the physician listings for VA, DC, and MD.  We will need the name, specialty, facility name (if applicable), phone, email, and full address. We are looking to list anyone who treats and has experience with dysautonomia, including primary care/internal medicine doctors.   If you would like to research a specific region, let us know.

Content Editors:   Review materials for the newsletter, web content, brochures, scientific write-ups, and any other content to check for grammar, punctuation, and content accuracy.   

Science Writers and Advisors:  Looking for anyone with a scientific or medical background to help write educational materials for a variety of projects, and review materials periodically.

Newsletter and Feature Contributors:  We will need contributions for our newsletter and web features on a regular basis. Everything from patient stories, to regular columns related to living with Dysautonomia.  Parenting kids with POS, caregiver stories, diagnosis stories, treatment options that have worked for you, etc…

Sponsorship Coordinators:  Collect and research local/regional potential sponsor information.  Anyone providing services that pertain to dysautonomia, or any personal contacts with businesses that would be willing to be a sponsor need to be compiled and eventually contacted.  If you would like to research a specific region only, let us know.

Events/Fundraising Coordinator:  Oversee and aid with local and regional events.  Find creative ways to fundraise for the organizations projects and research we are supporting. Professional event experience preferred.

Accountant/Bookkeeper:  Someone with NPO  to prepare our annual report and help with bookkeeping.

Regional Support Group and Event Hosts:  VA/DC/MD is a large region!  If you would like to host an event or support group in your area, let us know.  Whether it be a Skype meeting, in person, or an official event, we will need as many people as possible helping with this.  

Social Media Coordinator:   Make sure all social media accounts are up to date and the latest news is being shared about our organization in a professional manor.   

Media Blast Brigade:  We need lots of “Re-Tweeters” and “Re-Posters” of important news and announcements across social media.  If you would like to updated on any new happenings or announcements that you can share with your network, send us an email and we’ll keep you posted (so you can re-post!).  This is a VERY important part of our awareness campaign!

General Volunteers:  We will always need volunteers!  Want to be notified when new projects and positions come available?  There a ton in the works.  Email us and we’ll keep you updated!


  1. Hey babe I can't commit to a permanent position anywhere as my health is pretty much to poor for that now, but if you can think of a way I might be useful let me know. Happy to help. :)

  2. Thanks Michelle! You rule. Zombie promotional material maybe?? LOL

  3. Having connection issues, so sorry if you've received this post for a second (third) time.
    I just emailed you in response to volunteer opps. Hope I can be of help! :)

  4. Having connection issues, so sorry if you've received this post for a second (third) time.
    I just emailed you in response to volunteer opps. Hope I can be of help! :)