In early October of 2021, I happened to see a few threads on social media alluding to a pilot program that would develop a platform for more personalized care for ALS patients.
What caught my attention was the fact that the initiative was being led by Brian Wallach and Sandra Abrevaya, the co-founders of the phenomenal nonprofit I AM ALS. One particular mention indicated that ALS patients interested to learn more should message Brian on Twitter to learn more. So I did.
That direct message opened the door for José to access care and services through a start-up that was beginning to enroll patients in advance of its public launch. We had our first call with a Care Coordinator, Hali, on October 22, 2021 and José was officially enrolled in the days that followed.
Synapticure is being built-out as 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 that help ALS patients access:
- Genetic testing & counseling
- Home-based telemedicine access to leading ALS clinicians
- Stream-lined care coordination
- Information on ALS clinical trials
- Personalized services that go beyond traditional palliative ALS care
It was through Synapticure that José was able to proceed with genetic testing in late November—a process that can be difficult to access through insurance (and extremely costly otherwise) without the right support and coordination.
The genetic testing confirmed that José’s ALS is sporadic (vs. familial), providing him with invaluable peace of mind that his children and grandchildren are not at risk. Furthermore, some of the most promising new therapies in the clinical trial pipeline target specific genetic subtypes or molecular markers, so having these genetic test results in hand provides crucial data to inform future decision-making related to emerging treatment options.
We’re extremely grateful for the additional care options that Synapticure has already provided and look forward to sharing more in the coming months. If you know someone navigating an ALS diagnosis, consider sharing this resource with them.
Chicago-based Synapticure closed a $6 million round of seed funding last fall from GV, formerly known as Google Ventures, and a host of well-known tech investors and founders. They included Ben Silbermann, the chief executive of Pinterest, and Ron Conway, who was among the earliest backers of Facebook, Airbnb and Twitter.– A Race to Rethink Care After a Dire Diagnosis, New York Times
Thank you for the updates. What a great resource. Continued prayers for you both.
Thank you for allowing us to participate and support José on his journey. Sending prayers for everyone involved.
Wow! Incredible resource Wonder Woman! Thanks for sharing your strength, ingenuity, grace and love. You both are an inspiration to humanity,
Thanks, Jennifer, for letting us know that José has been able to get such complete info about his DNA; so important for the family, and to help you in treatment decision-making.