By Steve and Bert Bullock
Our grandfather, Herbert Hoffman, died from ALS in February 1943. This was less than two years after Lou Gehrig passed away and his name became forever attached to this disease.
We never knew our grandfather. But we knew and loved and treasured our time with our uncle, Hugh Hoffman. Hugh was 11 years old when his father died of ALS back in 1943. Hugh’s brother, Rowe, was 13 and his sister, Eleine (our mother), was 14. Hugh loved and adored his father. The pain of this loss stuck with Hugh all of his life.
Our uncle Hugh died peacefully last year at the age of 91. He never married or had children. Hugh had an excellent life with many friends, many interests, and great investing success. He also had a tremendous love for travel, sports and his home city of Cincinnati, Ohio. He lived and acted modestly while he built his wealth. Late in his life, Hugh began discussing a significant gift to the ALS Association to fight ALS.
How significant a gift? Hugh Hoffman’s estate directed that $58 Million Dollars should be given to the ALS Association! And it was further directed that this enormous sum should be spent entirely in the next 10 years so that it can immediately begin helping families living with ALS and advance the search for a cure.
To our knowledge, this is the single most significant private gift to support ALS research and patient care ever. Our friends at the ALS Association tell us that this gift, $58 million, is approximately half the amount raised by the Ice Bucket Challenge since 2014. Wow!
When we first began learning about ALS, we did not know what multidisciplinary clinics were or why they were important. We learned that multidisciplinary clinics bring together a team of specialists who can address the many needs of people living with ALS, all within a single visit. Amazingly, as we learned, access to multidisciplinary care has been proven to extend the life of someone living with ALS by up to 12 months.
Our uncle’s incredible donation will be spent to expand access to existing multidisciplinary ALS clinics and to certify new ones. In addition, the donation will fund new and promising clinical trials. This means more than Five Million Extra Dollars will be spent advancing research and care each year for the next ten years! The ALS Association has posted details on how this money will be spent here.
We are two of Hugh Hoffman’s seven nieces and nephews. We loved Hugh and it has been our honor to work closely with the ALS Association and several new friends we have made in the ALS community these past 10 months. Hugh’s wish to honor his father and his generosity will have a real and meaningful impact for families facing the same devastating diagnosis that affected our family. We hope this brings them hope!
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Comments
Thank you so much for this incredibly hopeful and positive information!! My son-in-law, Marc, has been able to survive with this terrible condition. for over 10 yrs. and I just KNOW we are at the juncture of what I considerable a miracle for all of us! These articles inspired me so! I pray daily, at dinner, for this breakthrough. as described herein. I actively support ALSA and all it does. I recruit supporters for legislative activity, etc. I feel refueld.
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