A L S Family Charitable Foundation, Inc.

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Visit to ALS TDI

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This June, (Mary Ann Sciaba) Singersen, President of the A.L.S. Family Charitable Foundation, Inc. visited ALS TDI along with family members of the late David M. Dorfman, including David’s wife Melody, their children, Jeremy and Shelly, David’s cousin, Linda Loew Miller and her husband Guy. Mary Ann presented a check and a plaque to Jamie Heywood, d’Arbeloff Founding Director of ALS TDI and the Dorfmans, symbolizing the commitment the Foundation has to supporting ALS TDI’s research in David’s memory.

David’s extended network of family and friends (Team David) has long been an essential element in the success of our Annual “Cliff Walk®”, raising funds and awareness for ALS research. Knowing how much David believed in the research being done at ALS-TDI, last September, we created the David M. Dorfman Research Fund at the ALS Therapy Development Institute in his name. We were honored to establish this fund embodying our and the Dorfman’s unwavering support of the important work being done at ALS-TDI everyday in search of treatments and a cure.

Over the past eight years, the A.L.S. Family Charitable Foundation, Inc. has granted more than $200,000 to ALS TDI, a state-of-the-art research facility in Cambridge, Massachusetts.  This funding has been instrumental in enabling the building and operation of the world’s first non-profit biotechnology company focused on a single disease.  

In a recent letter to ALS TDI’s supporters Jamie wrote…

“At ALS TDI, we use entrepreneurial spirit and techniques to aggressively seek out, develop, and deliver promising therapies to slow, arrest, and cure ALS.  We do this by identifying and filling gaps in the development process and defining and delivering the resources required to transform ideas into concrete therapies available to patients today. 

Leaving no stone unturned over the last eight years, we have:

Evaluated over 800 therapeutics and tested 150 in the ALS mouse model

  • Collaborated with industry, academic and government partners
  • Discovered a new compound with the potential to slow SOD1-familial ALS disease
  • Started two clinical trials
  • Defined the standards for using the mouse model
  • Shown that many drugs thought to work in the SOD1 mouse were false positives
  • Performed open source science at an unprecedented scale

  Though these accomplishments are remarkable, we remain keenly aware that it is not enough.  Today we are working to comprehensively understand the disease and continuously work to be more effective at building new treatments that can stop its progression.

ALS TDI is not about patents, profits, or publications.  What makes ALS TDI special is that is and always will be about patients.  We work for all the patients who have been part of the Cliff Walk.  We work to honor all those who have passed. We work for the 5,000 people living with this disease today and those who have not yet been diagnosed.”

 

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