Caring for More, Expanding Our Specialized Care for Huntington’s Disease

My name is Jaime Martin, and I am a neurologist with specialty training in movement disorders such as Huntington’s disease. I am also the Movement Disorder Chief at Synapticure. I am excited to announce that Synapticure’s telehealth clinic is now offering specialized neurological care to people and families affected by Huntington’s Disease (HD).

I’ve been involved in the HD community for over 20 years. I started in a research lab that studied HD and had the opportunity to observe HD clinics and trials. I’ve had the honor of working with the Huntington’s Study Group to help organize the annual Family Day meeting, educating other clinicians about how to navigate care throughout the stages of HD, and serving on various committees to help credential new research teams. But it was my experiences with HD sleepaway camps that made me fall in love with this community. Getting to know people with HD and their families while camping and doing other activities has allowed me to truly appreciate HD families’ unmatched grit and resilience. I’ve said before that the warmth, hope, and open arms of the community and how they show up for each other is inspiring to me, both as an individual and as a physician.

Unfortunately, many people with HD do not have access to neurological care or are given ill-informed advice. This lack of access to physicians who truly understand your disease led me to start my first telehealth clinic in rural Georgia for patients with movement disorders back in 2016 — allowing patients to be seen much closer to home, making visits more comfortable and convenient for them. The need for care has only grown since then.

The number of people with HD is now estimated at 41,000, with over 200,000 at risk. However, we suspect that this estimate undercounts the true size of the community, as many families and communities have not had reliable access to subspecialty diagnosis and care. Some haven’t sought care because they haven’t been accurately diagnosed. Some avoid seeking care because they believe nothing can be done. But, a neurologist who has special training in HD can provide a number of treatments to improve quality of life, safety, and help guide access to clinical trials and potentially disease-altering therapies. I have seen first hand that specialized care at the right time can change lives.

Given both the clear need and the power of subspecialty care,I am so excited that we are expanding Synapticure’s amazing patient-centered care to serve patients and families with HD!

We are a fully virtual practice who can work with your local medical care team to make your care personalized and proactive. In particular, we are able to focus on the issues that are most important to you and to help you navigate the nuances of your individual disease. Among the things we can do are:

• Perform virtual medical evaluations with one of our neurologists trained in movement disorders (Including being able to see children with HD and multiple family members at once)
• Offer genetic testing from home with pre- and post-test counseling by our own genetic counselors (including presymptomatic and anonymous testing)
• Review your medication list and discuss of the risks and benefits of the various treatments available
• Prescribe medications, therapies and equipment including working though prior authorizations and appeals
• Partner you with your own personalized care coordinator who will be your point person to help you navigate any issues that arise in your HD care
• Discuss clinical trial options, the science underlying trial drugs, and your risk-benefit tolerance, to help you find the right trial or you and your family 
• Answer questions about nutraceuticals based on reputable science and sources
• Identify resources for additional information, education, and support
• Aid with finding and referring to clinical trials
• Help you navigate your insurance policies, explaining available SSDI, Medicare, Medicaid, Veteran’s benefits, commercial insurance plans and supplements, and long-term care policies 
• Frequent touch points to make sure your needs and concerns are being addressed

We can do all of this as your primary neurologist or in combination with any other doctors on your care team.

Synapticure was designed by a patient with ALS for other people with neurological diseases. Maintaining a patient-centered approach is at the forefront of everything we do. Our goal is simple: to provide you with the best care and to help you navigate every aspect of your disease and your journey. We do this by transforming the care system into a proactive and personalized one with you at the center. We also know that when you need to see a neurologist, you can’t wait months for an appointment. We are here when you need us.

Reach out today to set up a free initial consultation with your personalized care coordinator to learn more about virtual visits with our team. We look forward to serving you and to helping you fight this disease.