Organizations We Support
Four years ago, we were unfamiliar with the range of activities and organizations operating in the ALS community. That changed when we began to work with the MGH Healey Center and their multidisciplinary clinic in Boston. They were critical in our early journey by helping us with a range of services, beginning with the very first conversations we had together with our family members.
Our mission going forward is to continue to identify and support organizations that support ALS patients and their families. Statistically, there is a new ALS diagnosis every 90 minutes, while another person dies from ALS every 90 minutes. We want to make our contribution to those yet to be diagnosed, so that we can eventually end this disease which exacts such a difficult toll on individuals and families confronting ALS.
Is there an organization we should take a look at? Please share it with us.
Our first grant
On February 15, 2024, The Debra M. Williams ALS Fund made its first grant to the UMass Chan Medical School. We are excited about their commitment to C9orf72 therapy development and look forward to continuing to partner with them in the years ahead.
Learn more about UMass Chan Medical School's work in the RNA Therapeutics Institute.
Types of organizations we have supported
Care & Support
Throughout our journey with ALS, we were introduced to accessibility architects, equipment suppliers, communications augmentation specialists, physicians, palliative care professionals, therapists, and research scientists. We have supported these organizations through our annual financial gifts and by making in-kind donations of equipment that supported ALS loaner networks.
Therapy Development
We also became acquainted with the range and complexity of research targeting new therapies, from organizations like ALS TDI to the many medical centers working in concert with a range of life sciences companies. We are particularly interested in work surrounding the C9orf72 gene mutation, a rare but identifiable sub-category in ALS that can facilitate more longitudinal studies of ALS disease progression.
Therapy Development
UMass Chan Medical School
The T.H. Chan School of Medicine is committed to training in the full range of medical disciplines, with an emphasis on practice in the primary care specialties, in the public sector and in the underserved areas of Massachusetts.
Why we like them
Using a short, synthetic chain of chemically modified nucleotides engineered in the RNA Therapeutics Institute, Robert H. Brown Jr. DPhil, MD, Jonathan Watts, PhD, and colleagues have shown the ability to suppress mutant forms of the ALS gene known as C9orf72 in a single-patient pilot study. C9orf72 is the most common cause of familial ALS and familial frontotemporal dementia (FTD).
We made our first grant of $10,000 in February 2024.
Care & Support
Compassionate Care ALS
CCALS provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life.
Why we like them
CCALS was a critical partner in our ALS journey, providing our family with advice on various adaptations for our home, ensuring that we were supported quickly with competent wheelchair support, and moving our stairlift into their loaner program for other families when it no longer aligned with our support needs. They are a proactive and flexible team which has walked alongside so many PALS since their founding.
We also donated our NuMotion chair into their loaner program.
Therapy Development
ALS Therapy Development Institute
The ALS Therapy Development Institute (ALS TDI) is the world's foremost drug discovery lab focused solely on ALS. As a nonprofit biotech, they operate without regard to profit or politics. Their mission is to discover and develop effective treatments for ALS.
Why we like them
ALS TDI is a dedicated therapy discovery nonprofit based in Boston. They were founded with the express interest in identifying very early-stage therapies that are focused around the chemistry unique to ALS progression. They do a great deal to bring a focus on this critical drug discovery and their community outreach helps widen awareness of ALS and the cutting edge of research.
Therapy Development
Healey Center for ALS
The Sean M. Healey & AMG Center for ALS at Mass General draws on our scientific expertise, uniting laboratory investigators, clinicians project managers, bioinformatic specialists and others to radically accelerate innovations in pursuit of a cure for ALS.
Why we like them
It is hard to capture the impact that Healey had on our family. They were really like an extended family for us from the day we received the ALS diagnosis, walking with us with their multidisciplinary care model that helped us handle difficult conversations and explained where we were with compassion.
Care & Support
Les Turner ALS Foundation
Les Turner aims to provide the most comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease, and advance scientific research for the prevention, treatment and cure of ALS.
Why we like them
Les Turner is a dedicated ALS organization based in Chicago and affiliated with Northwestern Medical Center where Abbey lives. Les Turner has been a source of support to Abbey and her husband, Ted, as they engage in the ALS community near their home and come alongside others as they travel their own journey with ALS.
Care & Support
I AM ALS
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.
Why we like them
Brian Wallach has used his platform to advocate for public policy changes, build a supportive community of ALS patients, and drive public awareness through the support of initiatives like MLB’s Lou Gehrig Day each year. I AM ALS also has a mentoring program to pair up individuals in the ALS community, and we are actively involved in this work.
Stu and Deb's daughter, Annie, have served as peer mentors since 2023.
Care & Support
Team Gleason
Team Gleason is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.
Why we like them
Steve Gleason, his family, and their team have built a remarkable organization based in New Orleans that specializes in communication devices for people with ALS. Working with Team Gleason, we received financial support in the acquisition of our Tobii Dynavox device and were privileged to move that device to Gleason to use in their network as a way to “pay forward” a remarkable technology when it was no longer needed in our home.