It’s A Wonderful Life: Gratitude for Friendships on our Journey

Every year during the holidays, I, like so many others, watch “It’s a Wonderful Life,” with Jimmy Stewart playing George Bailey. For a long time the movie was a reminder of the beauty in life despite the “what ifs” and “what could have been.” But now when I watch it, I think of my brother and sister-in-law, Brian Wallach and Sandra Abrevaya. When George Bailey’s guardian angel, Clarence, gives him a book with the inscription, “no man is a failure who has friends,” I am reminded how Brian and Sandra could only have built their advocacy movement and then, Synapticure, with the help of friends.

Brian and Sandra have always been the type of friends who are there for others, driving through the night if you had trouble. It’s what made them successful in their jobs at the White House and in the private sector. And when Brian was diagnosed with ALS, their network of friends returned the favor and ensured they saw the best neurologists and got the best treatment at the top clinics. On every step of that journey, they benefited from two critical privileges: connections and the ability to pay. But others don't have that same privilege. So we have made it a personal mission to make those benefits available to all.

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I AM ALS

Brian and Sandra launched I AM ALS to change public policy, increase funding, focus on ALS research, and ensure regulators showed the same flexibility in ALS as they do in other fatal diseases like cancer. As Brian’s childhood friend reported in WIRED, they were committed to “funneling a lifetime of experience and connections and determination into a singular cause while [Brian] still can.” 

But there would be no legislative success, no increased funding for ALS, and no increased awareness for the disease if I AM ALS was just one patient and one caregiver. Instead, I AM ALS thrived due to decades of collective political campaign experience, friendships forged through late nights on Capitol Hill, and hard won trust from a patient community that needs results faster than any single person can deliver. It has become 35,000 ALS patients and families asking those who represent them to recognize if there was a good treatment for ALS, there might be one million ALS survivors. It’s a reminder that while individual voices can struggle to be heard, many voices together can create a chorus.

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Synapticure

When COVID hit, thousands of friends living with ALS, Parkinson’s, Alzheimer’s, dementia, and related neurodegenerative diseases became orphaned from care. No clinic or non-profit was equipped to manage the changes virtual care brought. But out of that crisis arose an opportunity to democratize the care Brian and Sandra received because of their friends. Thus, Synapticure was born to address two challenges I AM ALS wasn’t built to solve: (1) Ensuring patients and families weren’t alone in their care journey and (2) Expediting treatments and cures for all neurodegenerative diseases. 

As with I AM ALS, Synapticure emerged from patients, caregivers, physicians and scientists working together. It was built with the lessons learned from thousands of broken care journeys, patients hopping across care siloes and constantly feeling like they were fighting for attention at clinics, which themselves were understaffed and under-resourced. It was built by former caregivers of parents, spouses, siblings, and children who lived with these diseases. It is backed by investors and partners who recognize their own family’s journey’s in Brian and Sandra’s and say, “This needs to exist.”

Which brings me back to George Bailey. Like any ALS patient, Brian has been dealt a few especially bad cards–but, he’s smiled and gritted his teeth through it all. He carries a rare gene variant that, despite having a potential treatment in early research, is decades away from being available because the existing infrastructure prevents the approach from being commercializable. It’s a heartbreaking reality, but one we’re working to change every day, together. 

We’re creating a new care model where patients receive not only specialized, accessible care, but also clinical trial guidance, applied research, molecular testing to enable that trial enrollment, and Expanded Access Programs. And–if there’s one thing that I hope for the 75%+ of people living with a neurodegenerative disease who don't see a specialist–it’s to change that story for patients with potentially game-changing therapies and to ensure patients can quickly access those trials. 

Thank you to those who have joined this fight. We know we are stronger with friends–and we are grateful for the chance to be your friends.