Patients in the United States wait an average of 34 to 50 days (roughly 1 to 1.5 months) for an initial neurology appointment, with wait times stretching up to 4 to 6 months in certain regions and in rural areas. Patient Worthy recently became aware of an alternative, nationwide telehealth option. Obviously some patients may not be able to set up a device and navigate a telehealth appointment on their own, but will be able to do so with the assistance of a friend or relative. Patients with ataxia, MS, Parkinson’s, and other conditions also find it difficult to get in and out of the car, and in and out of doctor’s offices. They often need assistance with in -person office visits too. We asked Sandra Abrevaya, co-founder of Synapticure, to tell us more:

By Sandra Abrevaya

1. What is Synapticure?

Synapticure is a leading virtual care company dedicated to expanding access to specialty care for people living with neurodegenerative diseases. We offer fast access to virtual, patient-centered care designed for cognitive disorders (e.g., Alzheimer’s, dementia), neurodegenerative diseases (e.g., ALS) and movement disorders (e.g., Parkinson’s disease, Huntington’s disease, ataxias). We recently expanded our virtual services to include care for ataxias, a group of neurological conditions characterized by progressive loss of coordination, balance, and motor function. People with ataxia may have difficulty walking, trouble with fine motor tasks like eating or dressing, changes in speech, and other symptoms over time. Ataxia symptoms vary by person and type of ataxia, but highly specialized care can be extremely difficult to find for people living with ataxias.

Synapticure aims to help patients access quality and patient-centered care from the comfort of their homes – a practice that I found significant need for in the neurodegenerative disease community following my husband’s diagnosis with ALS. With backgrounds in policy and a newfound appreciation for the importance of accessible care, Brian and I wanted to start a company to democratize the availability of quality care no matter where people live. Now, Synapticure expands access to expert-led care, cutting-edge treatments and clinical trials, and wraparound support in all 50 states.

2. Can you provide more details about the virtual ataxia care program?

 People living with ataxias are often misdiagnosed or see delays in diagnosis due to the rare nature of the disease. Further still, the rareness of many ataxias means that specialized care centers can be few and far between, a challenge for any patient to manage but especially those living with a movement disorder.

The virtual ataxia care program is designed to help eliminate some of these barriers to care by offering fast access to trained specialists to potentially help expedite diagnosis and connect patients and caregivers to care from the comfort of their homes. As a part of the program, individuals are either connected with Synapticure’s neurologists or can bring in Synapticure support to co-manage their care along an existing care team. The care program includes a wide variety of support options ranging from neurologic evaluations to at-home genetic testing and counseling to ongoing coordination with the broader care teams. We’ve also partnered with Biogen, who is helping to support disease education and awareness efforts of this resource through its extensive knowledge and deep roots in the ataxia community.

The implementation of this program marks a notable shift toward a more accessible future for ataxia care. Virtual care has never before been available for this population, so we hope that this innovative practice can help people living with ataxias explore new or extended care.

3. What are the benefits and what convenience does it provide to patients?

Outside of the convenience of virtual care, the new care program can provide patients with virtual medical evaluations, at-home genetic testing where appropriate (e.g., pre and post-test counseling by Synapticure’s certified genetic counselors), coordinated evaluation (e.g., comprehensive laboratory testing, brain imaging, and EMG/NCS), and review of evidence-based treatment options. The program also includes education about clinical trials studying ataxias, general guidance on participation, coordination with members of a patient’s care team (e.g., physical, occupational, speech therapists, etc.), behavioral health support, and caregiver resources. – Sandra Abrevaya, CEO and Co-Founder, Synapticure

4. How would a patient discuss Synapticure with their doctor?

While Synapticure operates independently and is solely responsible for its clinical services and patient care, adults with ataxias can receive specialized neurological care from Synapticure’s providers or be co-managed alongside their existing care team. If a patient has an existing care team that they would like to add Synapticure to, they should approach their neurologist and discuss how Synapticure’s support services may fit into their existing care regimen. It is important to note that Synapticure’s flexible care model is designed to complement, not replace, any existing specialist relationships a patient may have.

Highly specialized ataxia care can be challenging to find locally due to geographic access barriers, often forcing patients and their families into a years-long struggle to secure an accurate diagnosis and specialized clinical care. Virtual care offers an option for people living with rare diseases, and this new virtual ataxia care program can help to remove geographic access barriers and offer shorter wait times, ultimately helping patients bypass the typical delays in diagnosis and treatment. – Kristen Fortino, Senior Vice President, U.S. Rare Disease, Biogen