Important Message from the A.L.S. Family Charitable Foundation

The A.L.S. Family Charitable Foundation began in 2001 in hopes of creating a brighter future for those living with A.L.S. in New England and honoring the courageous individuals and families touched by this disease.

But we have difficult news: we have made the heart-wrenching decision to close the A.L.S. Family Charitable Foundation as of September 30th, 2022.

In 1998, Donna Jordan and I got together for coffee after she lost her brother, Cliff, and I lost my dad, Edward, to ALS. Our "coffee" lasted over six hours and from there, the start of our work to help ALS patients began. In 2001, the A.L.S. Family Charitable Foundation was born, and we never looked back.

In addition to supporting research efforts at The ALS Therapy Development Institute, it has been our mission to put family first as we knew how devastatingly horrific this disease was physically, financially, and emotionally.

Since the start of Covid-19, however, we have been unable to hold most of the fundraising events that supported the financial assistance we provided patients and their families through our many Patient Programs.

Because of our inability to help families as we have in the past, and because of continuing concerns about COVID and the economy, we have made the extremely difficult decision to close.

While we're hopeful about promising reports from some of the clinical trials, one of our greatest regrets is to leave before there is a cure.

However, we are able to close with confidence that there is an organization that holds our same values of putting families first: The Susie Foundation and their founder Ryan Matthews are well-established and well known to us. We have provided major grants to TSF in the past specifically because we believe in their mission and their methods of direct support, and they will be the recipient of all remaining funds. We trust TSF as a steward of our mission to put families first. Please check out their website for more information at

We truly hope you will support this exceptional organization as you have us: they do great work for New England families living with ALS.

Donna and I thank you for your support through the years. Our work with the A.L.S. Family Charitable Foundation and our patients and their families in loving memory of Cliff Jordan, Jr. and Edward J. Sciaba, Sr. has been the privilege of a lifetime. You will forever remain in our hearts.

With deepest admiration and love,

Mary Ann (Sciaba) Singersen
Co-Founder and President