The Raynaud’s Association needs to address a very serious issue: Are we worthy? Our costs keep going up and our donations aren’t growing enough to cover them. The large majority of our members don’t contribute to our cause, so maybe our efforts aren’t considered worthy of a donation? It’s a question we need to address.
We’re an all-volunteer organization, no staff, no overhead. Every dollar contributed goes toward helping to reach fellow Raynaud’s sufferers, building awareness among those who haven’t discovered the source of their pain and discomfort, and providing tips and product suggestions that can help make patients’ lives warmer and more comfortable.
Where do other healthcare support organizations get their funding? Many receive large donations from the pharmaceutical community. While several drug companies offer medications clinically proven to help alleviate Raynaud’s symptoms, they are all used “off-label” for Raynaud’s, meaning they were officially approved to treat other ailments. That means producers of these drugs are legally prohibited by the FDA from funding Raynaud’s education programs and donating to our cause. The inability to gain financial support from the pharmaceutical community puts us at a huge disadvantage because that’s how many obscure medical conditions gain media attention and mainstream awareness – not an option for Raynaud’s.
In response to being handicapped for pharmaceutical funding, we created our Corporate Sponsor program where we build relationships with manufacturers of warming products with the potential to help those with Raynaud’s. That program has grown, but we’re very selective about the companies who qualify for our Product Showcase, so it can only cover so much of our budget while we maintain our standards of quality and potential for product performance.
That means our organization must lean more heavily on individual donations for support than the average healthcare support group. To date, our fundraising record with members is abysmal: Less than 10% of our active members donate a dime or more to the Raynaud’s Association. It’s true, we don’t hit our members over the head constantly asking for funds. We ask on a welcome page after they sign up for the mailing list, try to remind them of our value once a year in December (peak giving season) through an email, and build requests into our annual Raynaud’s Awareness Month campaign efforts in October. It’s obviously either not enough, not working, or we aren’t worthy of their support.
Yet from the comments we see on our social media pages and contact forms, it appears our work is needed. Most patients tell us they received no advice or treatment options from their doctors (“Stay warm and move south…”) and found few knowledgeable resources before becoming aware of our organization. We work hard to keep our blog articles, Raynaud’s guide, FAQ’s and quarterly newsletters up to date with valuable information on research, coping strategies and stories of others with Raynaud’s to help our members be better informed and reinforce that they aren’t alone. But maybe it’s not enough, or our efforts aren’t worth a donation? We need to be honest in examining why we aren’t supported by our base members. And, if we close our doors, where will our members go for another Raynaud’s resource? To our knowledge, we’re the only non-profit organization in the world totally dedicated to serving the Raynaud’s community.
We’ve operated for the past two years at a deficit, and this pattern can’t continue. So we ask: Is our organization worth continuing? If you agree, please show your support by clicking the donate button below, texting SHIVERS to 44321 for secure mobile donations, or sending a check to 11 Topstone Road, Redding, CT 06896.
If we don’t hear from enough of you, we’ll assume we aren’t worthy and need to address a bigger issue of whether to continue our educational and support activities or close down our volunteer efforts. Either way, we need to seek closure on the value of our organization and will appreciate your input.
