New virtual neurological care program launches for ataxia patients
Synapticure offers specialized evaluations, genetic counseling, and more
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The virtual care company Synapticure has launched a new program to offer remote neurological care for people with Friedreich’s ataxia and other types of ataxia.
According to a press release from Synapticure, the new program can in some cases serve as a patient’s primary neurologist, or it can partner with existing care teams. Among other services, the program offers specialized evaluations, genetic counseling, comprehensive longitudinal care, and education about clinical trial opportunities, the company said.
The new program will be led by Elizabeth Ferluga, MD, director of movement disorders at Synapticure.
“Patients with ataxias are a community that has been underserved by the traditional healthcare system for far too long,” Ferluga said. “The Synapticure model is transformative for this population — we can meet patients where they are, perform a thorough evaluation, help them understand their diagnosis and what it means for them and their families, provide information about potential clinical trials, and be a consistent, knowledgeable partner in their care over time. I am incredibly excited to bring this level of support to the ataxia community.”
Synapticure aims to improve access to specialized treatment
Ataxia is a type of movement disorder characterized by a lack of balance and coordination. Friedreich’s ataxia is one specific form of ataxia that is caused by mutations in the FXN gene. There are also many other forms of ataxia. Collectively, these conditions affect tens of thousands of people in the U.S. alone.
People with ataxia typically rely on expert neurologists in order to receive optimal care. But actually finding neurologists with expertise in ataxia can be a major struggle, especially for people who don’t live close to academic specialty centers. By offering a virtual option, Synapticure aims to make this type of specialized treatment easier to access.
“For people living with ataxias and their families, accessing expert neurological care is often a years-long struggle,” said Sandra Abrevaya, CEO and co-founder of Synapticure. “Synapticure was built to change that dynamic — to expand access to specialized neurological expertise directly to patients where they live, and to make personalized, proactive care the standard rather than the exception. We are proud to now open our doors to the ataxia community.”
The new ataxia program was launched in partnership with Biogen, the company that markets Skyclarys (omaveloxolone), which is currently the only approved treatment for Friedreich’s ataxia in the U.S. Biogen is not directly involved in developing or administering the program, nor is the pharma company given a say in how patients receive care.
“Highly specialized ataxia care and expertise can be difficult to find locally, posing a significant challenge for individuals and families,” said Kristen Fortino, head of the U.S. rare disease franchise at Biogen. “Our commitment to people living with rare neurological diseases, including the broader ataxia community, extends beyond treatment. We are dedicated to providing meaningful support every step of the care journey including supporting greater awareness of available care resources.”
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