Superficial Siderosis Research Alliance
SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE
The Superficial Siderosis Research Alliance (SSRA) is a volunteer organization run by patients, caregivers, and friends, dedicated to raising awareness, supporting medical research, and providing resources for those affected by this ultra-rare neurodegenerative disorder. Our commitment to transparency, patient privacy, and sharing up-to-date, approved medical information sets us apart.
Join us as we work towards a future where Superficial Siderosis is no longer a life-altering condition.
OUR VISION is a future where a Superficial Siderosis diagnosis is no longer a life-altering condition.
OUR MISSION is education, advocacy, and to seek, raise, and provide funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder.
OUR PROGRAMS
Empowering Research
We’re proud to have allocated $100,000 to the Superficial Siderosis Clinic and Laboratory at Massachusetts General Hospital, thanks to the generous contributions from our corporate partners and individual benefactors. Our commitment extends to sponsoring three pivotal studies, offering financial support, administrative assistance, grant application aid, and study design guidance. Our research committee, a diverse group of top-tier researchers, patients, caregivers, and advocates, ensures a holistic approach to study design. For a deeper dive, explore our research page.
Building Research Infrastructure
The SSRA is instrumental in fostering the growth of the SS research infrastructure. We funded the creation and administration of the global Superficial Siderosis Patient Registry. As a research sponsor, we also shape targeted clinical research protocols, budgets, and project administration.
Education, Advocacy, and Outreach
Our mission at the SSRA is to champion the cause of the ultra-rare disorder, superficial siderosis, and its patient community. Using practical strategies, we aim to enhance awareness within the medical fraternity and the wider public. Our US, Canada, UK, and Australian volunteers leverage SSRA-approved print materials, grassroots outreach, social media, and educational websites to inform and engage.
Livingwithss.com – Your Digital Companion
Sponsored by the SSRA, Livingwithss.com is a digital magazine that keeps you informed and connected. We strive to bring you the latest medical updates, stories from our community, and a platform to connect with those who truly understand your journey. Dive in and discover a world of knowledge and support.
Fundraising Initiatives
We harness the power of social media to reach individual donors and collaborate with local events like 5k fun runs, trail runs, silent auctions, and t-shirt sales. Join us in our mission to make a difference.
FUNDRAISING AND ADVOCACY
Volunteer Spotlight
Jeffery Newholm
In the first of our series on Superficial Siderosis research advocates, Tanya provides vital information on her efforts in the fight for a cure. She explains her motivation and how to help with a fundraising trail race. There’s no self-interested motive beyond her desire to help those battling SS. Her words, then, prove sure, and any assistance one can give for the fighters at SSRA, however modest, gets us one stride closer to the disorder’s welcomed finish line.
Tanya Beers: Taking the Baton to Outrace Superficial Siderosis
Tell us why you organized the Trail Ginder Run to raise money for SSRA.
Holding a trail run is a great way to motivate the community and runners from all around to join us for a fun and challenging run and raise awareness and money for this cause.
Why is this cause important to you?
My uncle, Gary Daniel, was diagnosed with SS back in 2014. I have always known my uncle to be the type of person who was a hard-working hands-on type of guy. He was there to finish the job when someone needed fixing or repairing something. This cause is very important because seeing my loved one in this situation is hard. A situation where he feels so helpless.
Why should readers organize events, and would you be willing to help them start?
Not only are organized events a way to engage with individuals and bring a sense of unity and motivation for a common cause, but it also helps to raise awareness and money. Yes, I would absolutely be willing to help anyone out.
If one wants to get involved to help with your event, how can they?
We have several ways one can get involved. The first option is to purchase one of our Sponsorship packages that start from $50 up to $1000 and include several types of business recognition up to and during the race. Another way to get involved is to donate an item to our silent auction, which starts September 5th through September 29th. If anyone would like to donate items for the auction (please include a note with their retail value), you can fill out an online form with a photo (great for gift certificate donations!), or the item can be mailed to:
Caffe’ Crema 111 East Main Street Atlanta, TX 75551
Lastly, one can contribute directly by mailing a check or using our secured Trail Grinder donation link. All direct donations are tax deductible. All of the proceeds will be donated to research, and you’ll receive a receipt for your records via email.
