Synapticure’s Co-founders Featured on CBS Sunday Morning: “Fighting the good fight against ALS”

On Thanksgiving weekend, CBS Sunday Morning aired a story entitled “Fighting the good fight against ALS.” In it, Lee Cowan traced the history of Synapticure’s co-founders, Brian Wallach and Sandra Abrevaya, documenting their personal battle against ALS and their public battle against a health care system that is woefully broken for people with fatal neurodegenerative diseases. 

In his interview, Lee Cowan recalled the 2021 testimony in which Brian and Sandra told Congress: "This is our closing argument for our lives… We want to live. You have the power to make that possible." When Lee queried why that testimony brought Brian to tears, he said: "I was overwhelmed by the sense of responsibility that I felt to other patients.”

It is that sense of responsibility that led them to create both the non-profit I AM ALS as well as our specialty neurology clinic, Synapticure.

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How I AM ALS Changed Patient Advocacy

In 2021, Lee and the CBS Sunday Morning team first visited Brian and Sandra. That story, “Race to a cure for ALS,” recounted the tale of how Brian and Sandra met on a Presidential campaign. Then when ALS changed their storybook lives, he shared how they used their public policy expertise to launch I AM ALS with a goal to enact change with the same urgency as ALS was damaging neurons and in turn, destroying lives, including their own. To that point, Sandra said:

"When you are a patient, and you are driving the advocacy agenda, and
you're running out of time, you push hard and you do work differently."

Part of their mission with I AM ALS was to:

• give patients the power to make change
• help patients gain access to therapies 
• give patients a voice in their own care

As a patient-led advocacy organization, I AM ALS moved immovable mountains. Together, the ALS community passed the ACT for ALS, one of the top 50 most cosponsored bills in the last half century. Two years ago—just two days before Christmas—that bill was signed into law. As President Biden said, ”They turned their pain into purpose."

That bill was only one of many successes by the I AM ALS community. Among other things, the community developed a patient-centric rating system for drugs in clinical trials, encouraged drug sponsors and trial investigators to increase access, encouraged Congress to establish an ALS Caucus, increased research funding by $83 million, built a virtual support network for people in the ALS community, and advocated for regulatory flexibility in ALS drug approvals. 

But I AM ALS could only drive public policy. Brian and Sandra soon discovered that when they gave patients a voice in their own care, patients exposed large gaps in the healthcare model for people with neurodegenerative diseases. So they started Synapticure to fix that. The company and its medical practice are entirely separate from I AM ALS, with the only affiliation being the founder overlap and the knowledge that came from advocating for patients in concert with their lived experience.

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How Synapticure is Changing Neurodegenerative Disease Care

Synapticure was borne to ensure every person with ALS had the same urgent access to specialized care, clinical trials, genetic testing and wraparound care that they found for Brian. Sandra told Lee Cowan that so many people with ALS “hit a wall” with too few resources, too long of waits and too little access to specialists.

But just as importantly, as a caregiver, Sandra wanted to provide the support network to minimize the burden on the families who are decimated by ALS alongside their loved ones who were diagnosed. So together, this patient and caregiver designed a medical practice where patients’ and caregivers’ voices are prioritized in the care model.

When they listened to patients’ voices, time-after-time, Brian and Sandra heard stories of year-long wait times to see a doctor and even longer to get a diagnosis because many general neurologists are not comfortable making an ALS diagnosis. This resulted in many people not qualifying for clinical trials from the moment they received a diagnosis. They heard about medical care deserts where people in rural, underserved and underrepresented communities had never seen an ALS specialist; about neurologists who never talked about clinical trials; and about the lack of options for patients whose ALS prevented them from traveling to the major Centers of Excellence. 

Statistics back this up in other neurodegenerative diseases as well. In a new study funded by the Michael J Fox Foundation, 40% of Medicare beneficiaries living with Parkinson’s (nearly 250,000 people) didn’t see a neurologist. Nearly 90% didn’t see a neurologist specializing in Parkinson's and movement disorders. And among people of color, only 5% saw a PD specialist. 

It’s not just the lack of access to specialists, but Brian and Sandra heard about gaps in wrap-around services in many neurodegenerative diseases. Although we know that multi-disciplinary care can improve longevity and quality of life in ALS, many people weren’t participating in physical, occupational, speech and respiratory therapy as day-long clinic visits were too burdensome or too far.

Lee Cowan shared why physical therapy is important for another reason often overlooked by those not affected by ALS.

“Even though his legs are uncooperative, [Brian] still pushes himself to walk. And he says, every day he gets to try gives science another day to take its steps toward finding a lasting remedy.”

The MJFF study mentioned above also confirmed similar discrepancies in Parkinson’s wraparound care: 80%-90% of Medicare patients weren’t meeting with physical and occupational therapists, and over 95% with depression or anxiety didn’t see a mental health professional.

The gaps in support didn’t stop there. Caregivers expressed frustration about navigating insurance coverage for new treatments and debating the ‘medical necessity’ of medical equipment like a stair lift or an elevated seat on a power wheelchair. People weren’t told of the importance of genetic testing simply because they had no family history, and often when they considered testing, they had no counseling about its implications. Sadly, even when people sought out counselors to help them with the mental burdens facing families, many behavioral health specialists had no experience with ALS.

Most often, Brian and Sandra heard how people felt alone on this journey… and sometimes they experienced that too. They heard story after story about people who hadn’t seen a neurologist in years because “all they did was tell me how fast I was dying instead of helping me find a better way to live.”

In the CBS Sunday Morning story, Sandra told Lee Cowan:

"Basically they treat you like it's a straight line to palliative care, and they tell you to get your affairs in order and prepare to die."

But Brian and Sandra wanted to live, and they wanted that for other families fighting ALS. So they created Synapticure to address these gaps in care—not just for people with ALS—but for families with other neurodegenerative diseases like Parkinson’s, Huntington’s and Alzheimer’s, many of whom face similar hurdles. Today, every Synapticure patient is assigned their personal care coordinator who is your point person on anything you need. You are not alone in this journey.

Synapticure is not a provider who checks the boxes and sends you home to see your neurologist six months or a year later—we are your ally in care. We’re a friend to talk to with LIVED experience of caring for those with these diseases, and we are that team you can call if something is off to get help. For the 10+ million people living with a neurodegenerative disease, we know that means caring for everyone in the family and finding ways to make life easier.

Thank you to Lee Cowan and the team at CBS Sunday Morning for sharing Brian and Sandra’s journey: magnifying the impact of patient advocacy and spotlighting their mission to improve neurodegenerative care. But most of all, thanks to those who have joined us in “fighting the good fight.”