ALS research and the technology to care for patients have advanced rapidly in recent years. Despite this, too many people living with ALS still struggle to access care, testing and support for treatments and clinical trials that can help address their disease. It’s time to leverage and apply the advances in science and technology to make ALS care easier and personalized for all people living with ALS.
We are building Synapticure to be a full stack teleneurology platform that provides continuity of care to people living with ALS. This means developing a personalized care plan for each patient through cutting edge testing and consultations with ALS specialists at Synapticure and ALS clinics.
This is how Synapticure works.
From the moment you enroll, you will be paired up with an experienced Synapticure Care Coordinator who will help you navigate every step of your journey and every facet of the care system. People living with ALS or PLS often see multiple doctors and the administrative burden coordinating across those care systems falls on the patient and their families. Our care coordinators include registered nurses and social workers, who take this burden of paperwork and test organization off of you and create continuity of care. We bring all of your medical records together and organize them in a way that makes sure you and your care team have a clear view of what you have been tested for and what might be missing. Our goal is to help expedite an accurate diagnosis, cutting down the 16-19 months it typically takes. And it provides you with more information about your disease, enabling you to act during this critical initial window. In addition, our Care Coordinators provide you with support in advance of, and in between appointments so you never feel alone. We will do the homework with you so you always feel prepared.
Synapticure uses telemedicine to make life easier for people living with ALS and PLS. The stresses of the pandemic only add to the burden of traveling to an in person clinic visit with a disease that is robbing you of the ability to walk, talk and breathe. Certain elements of care need to be handled in person and so Synapticure will always partner with a doctor who sees you in person. That said, recent advances in technology and science have made it possible for much of your care to be handled from the comfort of your home. Synapticure’s team of teleneurologists come from top ALS clinical training programs and are available when you need them for telemedicine appointments. Moreover, our doctors partner closely with the rest of your care team - whether that’s a local PCP, neurologist or specialist - to make sure our care is well coordinated with them and that we’re all on the same page. And if you are not seeing a center of excellence and want to, or are not happy with your care and want to supplement it, we will work with our network of partners to get you seen as quickly as possible.
Some of the most promising new therapies in the clinical trial pipeline target subtypes of ALS & PLS—either specific genetic subtypes or specific molecular markers. Every person living with this diagnosis—regardless of family history—should have the opportunity to immediately access this information about their type of ALS or PLS to best inform their treatment options. Given the rapid pace of innovation in therapy development, a clinical trial may be the best treatment option for you, and genetic tests provide critical information to help you make that decision. Our care coordinators work with you and our partner genetic testing labs and counselors to seamlessly and quickly get you the testing and pre and post test counseling you need to understand your type of ALS or PLS. Since research is rapidly evolving, Synapticure and our partners will periodically re-evaluate your genetic test results alongside your medical history to provide you with updated clinical trials and other treatment options. Synapticure patients have already found previously missed genetic variants as a result of our care program that made them eligible for a currently enrolling clinical trial.
We now understand what we did not understand as well just a few years ago—ALS and PLS are extremely heterogeneous diseases. Every year we are discovering new genes and pathways linked to ALS & PLS that could be more effectively addressed with targeted therapies. Our care system, however, has not kept pace with these discoveries and too often treats patients as one-size-fits-all. It’s time to leave behind the old era of palliative care. It’s time to get you personalized care plans that take advantage of the latest advances the field has made. This is how Synapticure works.
If you would like to enroll as a patient under Synapticure and you live in one of the following states, please reach out to your care coordinator and we’ll ensure we get you scheduled as soon as possible. Even if you’re not in one of the below states, let us know. We are working to expand to all states as soon as possible.
CareND currently has licensed providers in all 50 states, and D.C..
"Synapticure has been a fantastic ally in my quest to understand and fight ALS. They provided access to advanced genetic testing and counseling that surpasses what my clinic offers. Their care coordination staff is amazing, helping me organize and interpret my test results, connecting me with academic specialists to provide individualized answers, and really listening and responding to my never-ending stream of questions."
“Synapticure has filled me with hope. No other doctors I’ve seen have explained to me the value of genetic testing.”
"My Care Coordinator is fantastic. She is informed, thorough, and most importantly *responsive.* That focus makes Synapticure special, and my Care Coordinator is a big part of it."
I cannot thank you enough for what you have already done for my father; from your kindness with onboarding him, checking in with him, providing him with so many resources and getting him set up with genetic counseling so quickly. I will forever be grateful for the Synapticure Care Coordination team.
“My care coordinator recommended that I look into a number of clinical trials to see if I would be a good candidate. She provided me with enough information that I felt comfortable approaching my Neurology team at my medical center about it, and we are currently investigating which would be the best fit for my current condition.”
Thank you for persevering on my behalf [to refer me to an ALS specialist]. Your hope keeps me going! Thank you for being there for me.
Interested in seeing one of our neurologists, but not sure what it will cost or if we accept your insurance? Complete the form and we provide you with a personalized estimate of the out-of-pocket cost.
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