This study will assess the tolerability and efficacy of Riluzole in presymptomatic individuals who carry a pathogenic or likely-pathogenic gene variant.
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Anyone 18 years old and older who is a carrier of a pathogenic or likely-pathogenic ALS-associated gene variant and is presymptomatic or asymptomatic.
You are likely eligible to enroll if you carry a variant in ANXA11, C9orf72, CHMP2B, FUS, SOD1, KIF5A, NEK1, OPTN, PFN1,TARDBP, TBK1, VAPB, VCP, or UBQLN2, or other ALS-associated genes that have been categorized as likely-pathogenic.
You must be able to meet virtually via a telemedicine platform on a monthly basis with their Synapticure care coordinator, every three months with their Synapticure neurologist and twice yearly with an independent neurologist for a face-to-face visit.
Visits may be covered by insurance, may require a co-pay, or may be an out-of-pocket expense. The co-pay for most Synapticure patients falls between $0-40 per visit, and we estimate medication will cost less than $20 per month.
Stay tuned on updates from team Synapticure on the latest research, insights and innovations in ALS Disease
Synapticure’s Neuromuscular Service Line is led by Dr. Danielle Geraldi-Samara, a fellowship trained neuromuscular specialist with a career-long focus on ALS and other motor neuron diseases. Dr. Geraldi-Samara launched and supervised two community based ALS clinics prior to joining Synapticure
After graduating from the State University of New York at Syracuse with her MD, she completed both her neurology residency and clinical neurophysiology/neuromuscular fellowship training at the Mount Sinai School of Medicine in NY, NY, where she was also selected to serve as Chief Resident during her final year of training.
Register here for Synapticure and schedule an intake call. No worries — the intake is 100% free and allows us to talk about your diagnosis and current health-related needs.
After deciding to continue care with
Synapticure, schedule a followup with one
of our amazing Neurology specialized doctors. We'll talk as long as we need to understand your history—no cutoff times.
We'll gather your full medical history and coordinate with your Primary doctor, if you wish to keep us secondary. Prescription refills, and follow-up visits from your phone.
Regular visits with your doctor are important in tracking your progression and regulating medications. We make those check-ins as painless as possible, so that you can get back to living.
Juggling your care is overwhelming. No more scouring the internet to find local resources or new devices; no more researching new clinical trials and off-label therapies on your own. Let someone else do the work for you.
We coordinate genetic testing and counseling in order to place you in the right clinical trials. We navigate insurance for you, to make sure the medication you need is covered. Our list of in-house services is continually growing, with mental health and psychiatry support on the way.
Mindy Uhrlaub
In 2020, my mom died of C9orf72 ALS. For the last three years, I've cried tears of frustration and grief when I've thought about my family's gene mutation. For the first time, I'm crying tears of joy. This observational study for premanifest gene carriers like me is a game-changer. It could potentially buy me time and give my kids hope for a future without ALS.
