The Superficial Siderosis Research Alliance Nonprofit Founders
There is no greater motivating force than the sense of urgency and concern you experience as parents or a family member when someone you love is diagnosed with superficial siderosis. This ultra-rare neurodegenerative disorder affects less than one in one million persons worldwide.
Kyle and Sue Dempsey
Superficial siderosis entered our lives as a result of head trauma from an auto accident. Our daughter is one of the lucky few to receive a correct diagnosis early on in the progression. Our search for treatment options has now included surgery to repair an ongoing bleed in an attempt to stop the build-up of hemosiderin and trying to remove the existing neurodegenerative iron through chelation.
While we hope our girl will be given a chance for a normal life, we understand that research is critical to the long-term success of those with this disease. We have experienced first-hand how rare this disease is and the challenge of finding knowledgeable medical professionals.
A Community Effort
Sue and I are incredibly excited to partner with Livingwithss.com founders Gary and Rori Daniel. Our collaborative effort is to bring together the livingwithss.com superficial siderosis information website, the superficial siderosis patient registry, with all of our fellow SS community, family, friends, and advocates to aid in medical research for those fighting the neurodegenerative disease superficial siderosis.
We hope our continued partnership with SSRA medical advisor Dr. Micheal Levy (who has accomplished so much already on a very slim budget) will lead to new and exciting breakthroughs in the field of superficial siderosis research. Every alliance is only as good as its team. Over time, by recruiting regional leaders to coordinate fundraising efforts and help identify interested business sponsors, we will build this into a powerhouse alliance dedicated to helping find options for existing and future patients diagnosed with this devastating disease.
Becoming an Advocate
I have now participated in two rare disease conferences in Washington D.C., am actively fundraising and spreading superficial siderosis awareness to others at every opportunity. Sue and I currently live in Wisconsin, and we hope to meet as many people as we can over time to further our mission. In addition, we have recruited a remarkable, diverse, and experienced Board of directors ready to hit the ground running.
Together we can make a difference in all of our lives and especially for our loved ones diagnosed with superficial siderosis. This is why the Superficial Siderosis Research Alliance, a 501(3)(c) nonprofit, has been created.
Kyle Dempsey, Co-Founder, and President, Superficial Siderosis Research Alliance (SSRA)
Gary and Rori Daniel
The Living With Superficial Siderosis website began to keep family and acquaintances updated after my husband was diagnosed with Superficial Siderosis in 2014. The information outlining the road ahead for him was bleak. It wasn’t long after the website began I realized we had an opportunity to upload as much superficial siderosis related data, information, and news as we could gather in a non-identifying generic information format to help educate others in our community.
Finding an Ally
Our part in the SSRA alliance began with a simple email, “Hi, my name is Kyle Dempsey. I was reading through your website about superficial siderosis. Who are you?” It’s hard to lay your life bare for the world to read, but I realized after exchanging emails, it was time for us to come out of the shadows, ditch the generic format, and produce some honest first-person writing, no matter how uncomfortable. People appreciate the information, but they really need to connect with someone who fully understands this frightening journey of superficial siderosis.
As our conversations continued, we spoke of the need for more research and funding. One question Kyle voiced, “Does the superficial siderosis community have a non-profit organization in the U.S.?” A single hard-working charity based in the U.K. was the only organization. We discussed the obstacles and missed opportunities this presented. Every rare disease support resource always asked: “Are you a registered 501(c)(3)?”
Meeting
My husband and I met Kyle during a rare disease conference we attended in Washington DC. Of course, we spoke of the what-ifs. But, Kyle kept the conversation going when he returned home with doctors, business owners, and fellow fundraisers. Finding the support, they knew an organization like this would need Kyle, and his wife chose to take this giant first step.
The Superficial Siderosis Research Alliance is supported by a fantastic board of directors who have volunteered their collective experience in the world of fundraising, marketing, business, accounting, and medical fields. Unfortunately, superficial siderosis is classified as an ultra-rare disease. Still, our worldwide patient population grows every day as physicians begin to understand and recognize the progression of symptoms that appear long after the trauma or surgery responsible.
Rori Daniel, Vice-President, Superficial Siderosis Research Alliance (SSRA)
Meet Michael Levy MD, PhD
Dr. Levy is a neurologist with ten years of clinical and research expertise in rare neuroimmunological disorders. This Houston, Texas native earned his medical degree from Baylor College of Medicine. He then completed his residency in the Johns Hopkins neurology program in 2005, a fellowship in neuroimmunology in 2008, a faculty member at Johns Hopkins University since 2009, and was the Director of the Johns Hopkins Neuromyelitis Optica Clinic.
He first became aware of superficial siderosis during his residency at the Johns Hopkins Hospital when a 48-year-old patient presented with unexplained symptoms and a two-year history of worsening gait, clumsiness, leg cramping, memory impairment, and dysarthria. The patient’s medical record revealed a two-week hospital admission at the age of three after being involved in an auto accident that resulted in head trauma and a coma.
In a case study accepted September 2006 by PubMed, peer-reviewed in February 2007, and updated in May 2012 American Journal of Neuroradiology, Dr. Levy and Dr. Llinas demonstrated the efficacy of deferiprone (Ferriprox), a lipid-soluble iron chelator, for reducing hemosiderin deposition through MR imaging of a single patient on deferiprone for 18 months.
Based on the findings of this single case report, Dr. Levy and Dr. Llinas were able to conduct a pilot trial of ten patients with superficial siderosis by using 30 mg/kg/day of deferiprone and found that four patients showed MR imaging changes in as little as three months. This pilot trial demonstrated that Ferriprox (deferiprone) is the only chelation treatment to show any efficacy, and its use emerged as the standard of care for the treatment of superficial siderosis.
Dr. Levy moved to Massachusetts General Hospital and Harvard Medical School in 2019 to continue his research work. Current projects focus on expediting the iron chelation process, improving MRI outcomes measures, and characterizing the pathological changes in brain areas exposed to hemosiderin.
Dr. Levy has more than 95 peer-reviewed research articles, reviews, and editorials and three patents covering NMO tolerization therapy, TM diagnostics, and stem cell regeneration approach. Dr. Levy is currently the chief editor at Multiple Sclerosis and Related Disorders and sits on the editorial board for the Journal of Neurological Diseases and on scientific advisory boards for Alexion, MedImmune, Chugai, Shire, and Quest Diagnostics.