Normally it’s patients who are considered disabled or handicapped, not the medical condition itself. But for Raynaud’s, it’s a different story: Read further to learn why Raynaud’s is handicapped.
During Raynaud’s Awareness Month in 2021, something amazing happened: We attracted the attention of Lifetime Television. They planned to do a segment on Raynaud’s that would reach the second largest TV audience of the demographic group most likely to have the condition.
Unfortunately, we had to decline the opportunity. Why? Because we couldn’t fund our share of the production costs required to produce the show. Their team assumed we could obtain the funds from a pharmaceutical company, as is the case for most non-profit healthcare organizations. But that’s not an option for us because there are no FDA-approved drugs for Raynaud’s.
Raynaud’s Is Handicapped Compared to Other Medical Conditions
While there are medications clinically proven to help alleviate Raynaud’s symptoms, they are all used “off-label,” meaning they were officially approved to treat other ailments. And producers of these drugs are therefore prohibited from funding Raynaud’s education programs. 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.
Why Building Awareness is So Critical
Opportunities like these are critical because most sufferers – 90% – don’t know they have a medical condition, and so they don’t seek medical help. That’s 9 out of 10 of the 15 million+ people estimated to have Raynaud’s. Awareness and medical attention are important not only to make a sufferer more comfortable, but also to prevent permanent blood vessel damage and to rule out more serious autoimmune diseases such as scleroderma, lupus and rheumatoid arthritis.
We’re Making Progress, But It’s Not Enough
This past year’s Raynaud’s Awareness Month press announcement in October was posted by over 100 media outlets representing a total potential audience of 83 million. To date, over 55,000 people have taken our Raynaud’s Quiz, engaging participants in recognizing Raynaud’s symptoms and further promoting the need to take Raynaud’s seriously.
We are gaining momentum with our limited resources and all-volunteer team, but it’s just not enough to achieve the impact Raynaud’s deserves.
It Wouldn’t Take Much from our Members to Make a Difference
We can’t do this job alone. How can you help? If each of our members donated just $10, we could fund the Lifetime TV project. That doesn’t seem like such a tough hurdle, does it?
If you can’t donate, there are other ways to help us raise money to fund Raynaud’s awareness activities:
When you shop on Amazon, go to AmazonSmile and choose the Raynaud’s Association as a recipient of a portion of the proceeds. (Use the link above and you’ll be all set!)
Consider asking for a tribute donation in your name to the Raynaud’s Association when it’s your birthday or for a gift-giving occasion like the holidays.
We Put Every Dollar to Work
As an all-volunteer organization, there are no salaries, no overhead, no hefty administrative costs. All of our resources are devoted to supporting the Raynaud’s community. Every dollar you donate will go directly to helping our cause. If you can, please donate now. Click to make a donation by credit card or text SHIVERS to 855-997-2919 for secure mobile donations.
Your support can help enhance the lives of millions of sufferers. And maybe next time we’re fortunate enough to gain the attention of a well-established media partner, we’ll be in a position to act on behalf of the Raynaud’s community.
Keep up the great work with the newsletter, always a pleasure to read.
By J.C. (Canada)
Great Work with the Newsletter
I want to learn everything I can about this disease and to deal with it…Thank you for this website.
by M.R-B. (VA)
Thank You for This WebsiteG. Grant
Glad I found you! I live in Minnesota and I am really glad you test products that might help me. I’ll keep an eye on your web site this winter!
by C.G. (MN)
Glad I Found You!
Found the information on products to help me cope with this disease very informative and helpful. The product reviews are exactly what I was looking for.
Very Informative and Helpful
I’m thrilled I found your website – glad to know there are others just like me out there dealing with ‘cold’ fingers. Can’t wait to be included on your mailing list and newsletter. Thanks!
by S.S. (PA)
I’m Thrilled I Found Your Website
I am a huge fan of (the RA) site. They continue to keep me up to date with research, potential methods to help reduce the frequency of a flare up, as well as new gadgets that can help! It is definitely my “go to” for the latest and greatest for trust worthy information…I highly recommend this site!!!
by A.J. (TN)
Definitely My "Go To" for the Latest and Greatest
Thanks for all of your championing for patients.
by N.W. (UK)
Thanks For All of Your Championing for Patients
I was diagnosed with Raynaud’s in 2013. This website is very much appreciated. My doctor couldn’t really give me any tips on daily living, so your blog is invaluable.
Your Blog Is Invaluable
After years of issues, this group has been essential not only for providing helpful information, but also for support from others who suffer from Raynaud’s.
Helpful Information and Support
I am happy to finally come across a site like this…I really hope to learn more about this through other fellow members…and to try to help them with my experience.
by H.R. (NY)