Welcome to the May 2023 edition of The Stiff Person Syndrome Research Foundation (The SPSRF) newsletter. This newsletter will motivate you to get involved and support our mission to improve the lives of individuals affected by Stiff Person Syndrome (SPS). As a non-profit dedicated to finding a cure for SPS, our work is more important than ever. Thank you for your continued support!
Patient Registry Update: NORD
The SPSRF is excited to announce that we are onboarding with NORD to kick-start the creation of a patient registry. A patient registry is critical for advancing research and improving care for individuals with SPS. By collecting patient data, our patient registry can help accelerate the development of a cure for SPS. Stay tuned for more information on this exciting development and ways you can help!
2023 SPS Annual Conference
Last weekend, Tara Zier, The SPSRF Founder, had the pleasure of speaking to over 260 registered attendees at the Northeast Stiff Person Syndrome Awareness Annual Conference. The conference was a great success, and we can't wait to see it's future impace in assisting us in finding a cure for SPS. Be on the lookout for an upcoming conference recap and video!
An Update on our Super-75 Campaign
We're excited to share that our Super-75 campaign (75 individual-led campaigns to raise $75K) is off to a great start. But we still need your help! Creating a Facebook Fundraiser is a great way to raise funds and awareness for The SPSRF.
Are you interested in starting a Super-75 campaign? Below are a few tips (and a tutorial) to make the process as easy as possible.
- Set a clear fundraising goal and show your commitment by being the first to donate
- Share your personal story and connection to SPS
- Use eye-catching visuals to grab attention
- Share your fundraising widely with friends, family and colleagues
Contact us if you need assistance creating your fundraiser!
IN THE NEWS
US News & World Report SPS Article
A recent article published by US News highlights the difficulties of living with SPS, including misdiagnosis and the lack of a cure, as well as the essential work to raise awareness and fund research. Read the full article to learn more about the efforts to improve the lives of those affected by SPS.
Alison Lafferty: A Daughter, Wife, and Soon-to-Be Mother Who Inspires Us All
Alison Lafferty's life changed drastically after being diagnosed with SPS in 2021, which prevented her from doing the things she loves. Her story is a testament to the strength and resilience of those living with SPS. Alison's determination inspires us; we believe her journey will move you.
A Final Thought - THANK YOU!!
Thank you to everyone who participated in our recent subscriber survey! Our key takeaways are:
- You'd like to hear from us more frequently. In response, we're increasing the frequency of our updates (like this newsletter).
- Our audience places a high value on education about SPS. As a result, we plan to incorporate more informative content in our future communications.
- Our community wants more information to help raise awareness -- lookout for additional resources and patients' experiences/stories to share.
Your feedback is invaluable, and we appreciate your time.