Standing Up to POTS is a 501(c)(3) nonprofit organization run exclusively by volunteers. Our volunteers play a vital role in helping us to promote our mission: Standing Up to POTS will investigate quality of life issues, implement research-based initiatives to improve quality of life for people with POTS, and accelerate public awareness. Volunteers who spend even 1-2 hours a month would make a huge difference in what Standing Up to POTS can do. Many hands make light work.
Below are specific areas where we are seeking volunteers:
- Editing the website. It is important to check links to other pages and update information on the webpage regularly. Volunteers could edit 1 or 2 pages per month and send updates to a Board member.
- Finding important ideas from the scientific literature for the Fact of the Week. We send out soundbytes from the current scientific literature that pertains to POTS via Facebook and Twitter weekly. Volunteers could read the abstract and discussion section of articles published within the last year and send them in for use.
- Coordinating a local fundraiser to benefit the Standing Up to POTS Research Fund. Choose from a variety of options to fit your personal style as you fundraise for our organization. Check out our fundraising page for helpful tips.
- Helping with graphic design. We need help with designs for t-shirts to be sent to donors and for events like the Standing Up to POTS 5K. Creative volunteers are definitely needed!
- Getting local press coverage. Writing an article for submission to your local newspaper about your experience with POTS or an event that you are organizing is a great way to raise awareness locally. Check out our page on creating press packets for ideas on how to raise awareness through your local media.
- Starting a support group. Many of us feel isolated by our illness. There may be other people in your community that also suffer from POTS who would benefit from your initiative to start a local support group. Meeting monthly or quarterly with others who truly understand life with POTS can be life changing.
- Representing Standing Up to POTS at health fairs or conferences. Unfortunately, many healthcare practitioners are unaware of POTS and its debilitating effects on the individual and their family. Volunteering to speak one-on-one with healthcare practitioners or community members at your local health fair or conference is a great way to spread awareness about POTS.
- Distributing brochures to healthcare providers in your area. Raising awareness of POTS in our local communities can help those currently suffering from POTS and future patients. Distributing materials to family practice, pediatric, obstetrics/gynecology, neurology, and cardiology offices in your area can promote POTS literacy and generate understanding in your local healthcare practitioners.
- Writing a newsletter column. Look for opportunities to share with your community about POTS. Does your child's school send out a newsletter? What about a newsletter at work? Could you submit an article to your local newspaper? Writing a short column about POTS symptoms and diagnosis could help other families shorten their time to diagnosis.
- Writing awareness pieces. There are many avenues for writing articles about your experience with POTS online. Look at The Mighty, Patient Worthy or other sites as places to increase awareness about POTS in the general public.
- Working toward a diagnosis code specifically for POTS. It's hard to believe that healthcare practitioners (and insurance companies) do not have a dedicated diagnosis code specifically for POTS. Those who have some legal background might be able to help us make progress in legitimizing POTS in the minds of healthcare professions through the designation of a specific diagnosis code for postural orthostatic tachycardia syndrome.
- Serving as administrator in Facebook groups. Standing Up to POTS runs two groups. The administrator needs to check potential members to be sure that they are not spammers, monitor posts/comments for appropriateness, and provide leadership to the group.
- Finding potential corporate sponsors. Like most nonprofit organizations, we are always looking for new streams of revenue. Identifying new potential event sponsors, opportunities for corporate donation through purchase price percentage (they donate 5% of designated sales to Standing Up to POTS), or other avenues would be greatly appreciated!
If you believe in our cause and want to be part of our team, please fill out this survey. We appreciate your interest!