Our Approach on Synapticure
Synapticure is a for-profit organization that provides personalized care to people impacted by ALS, PLS and Parkinsons. They launched Feb. 1, 2022 through the publication of an article in the New York Times, and were founded by I AM ALS’ co-founders, Brian Wallach and Sandra Abrevaya.
I AM ALS and Synapticure
- I AM ALS and Synapticure are two completely distinct entities – Synapticure is a for-profit company with its own board and operations, I AM ALS is a non-profit organization with a separate board and distinct operations.
- I AM ALS and Synapticure have separate funding sources which do not collaborate in any way (even if the same source funds both entities). Neither I AM ALS nor Synapticure share revenues or expenses in any way.
- Directors of I AM ALS are fiduciaries of I AM ALS, not Synapticure. But to further prevent or attend to any perceived or real conflicts between the two organizations, there is an Independent Committee on the I AM ALS board that ensures the two entities maintain ethical and legal boundaries. Members of the Independent Committee are I AM ALS board members and have no financial ties to Synapticure. If you would like to contact them, please email [email protected]. More on them below.
- I AM ALS and Synapticure share the same co-founders – Brain Wallach and Sandra Abrevaya – and have some overlap in donors/investors.
- The mission of both are aligned in seeking treatments and ultimately cures for ALS while supporting those impacted along that path.
- I AM ALS is solely focused on supporting people impacted by ALS at this time, while Synapticure provides assistance to people living with ALS, PLS and Parkinsons.
- I AM ALS focuses on community building, support and advocacy, while Synapticure focuses on improving access to medical care and research.
Interactions – what we do together
- I AM ALS’ ALS Support Specialists (Support Specialists) refer clients to information and resources they determine to be appropriate based on clients’ presenting needs. Synapticure is one of several organizations that the Support Specialist team uses to supplement people living with ALS and their loved ones needs, all of which are independently selected based on their impact and fit to that client. As of now (Feb 2023), I AM ALS often refers people living with and impacted by ALS to Synapticure, along with other organizations, for the following services:
- Telehealth with ALS medical providers
- Genetic testing and counseling
- Personalized clinical trial education and matching
- Insurance navigation
- Synapticure refers people impacted by ALS to I AM ALS for personalized assistance with navigating the emotional and practical challenges related to ALS, including to:
- ALS Support Team
- Peer Support Initiative
- Support groups
- In addition, Synapticure refers those interested in ALS advocacy to I AM ALS.
- Our teams have an ongoing dialogue that ensures we understand each other’s capabilities and resources, and we can accurately describe and recommend them to the ALS community
- For I AM ALS in particular, this is done in the broader context of many other 3rd party organizations we recommend to clients that are beneficial in their ALS journey. Synapticure is treated similar to these other 3rd parties, recognizing that in addition they are not the same as any other partner for the reasons listed above.
- When I AM ALS’ ALS Support Team refers clients to Synapticure, we disclose our connection by telling clients, “Brian Wallach and Sandra Abrevaya co-founded both I AM ALS and Synapticure. We work with Synapticure the same way we work with other ALS organizations and refer people to Synapticure who are interested in learning more about their services. I AM ALS does not charge for services, while Synapticure may charge for some services.”
Interactions – what we do separately
- Given the separate nature of the organization, we do not coordinate with Synapticure – they are an organization to partner with in finding the best way for our community to care for and eventually cure ALS
- To that end
- We do not coordinate social media or advocacy campaigns
- We do not share mailing or donor lists
- In general, I AM ALS partners with Synapticure where both groups feel like they can benefit to the community, and otherwise have limited interaction
I AM ALS Board Independent Committee
- Given the overlap in Founders and in some cases funders and other stakeholders, I AM ALS decided at the onset of the creation of Synapticure – before the launch, once the idea of Synapticure had progressed enough to warrant discussions at the board – to create an independent committee of board members with no real or perceived interest in Synapticure (financial or otherwise)
- The board invested this committee with ultimate decisions in regard to any interactions with Synapticure, and as a resource for I AM ALS staff to use if/when any potential conflicting situations arose
- The predominant role and goal of the committee has been to ensure that I AM ALS lives up to its non-profit mission and community/patient promises, and always makes decisions with those two vectors in mind
We will find cures for ALS. The only question is when. That answer depends on you.
Stay informed on I AM ALS’ progress and what you can do to help us make hope real.
UPDATE: I AM ALS delivers petition signed by 30,000 to FDA’s Dr. Peter Marks
Today, we delivered a petition of over 30,000 signatories to Dr. Peter Marks at the FDA!