ALS Research Update from New York Genome Center Scientific Director and CEO – Dr. Tom Maniatis

From donations raised through the ALS Ice Bucket Challenge, The ALS Association, in partnership with the Greater New York Chapter, made a $2.5 million commitment to the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC). This commitment, combined with a matching gift from the Tow Foundation, was one of the driving forces supporting the NYGC’s ALS research program in 2014. Three years later, the NYGC’s CGND has made enormous headway in the ALS genetics space and has become one of the major leaders in the field. Their accomplishments are broad in that they have sequenced and analyzed hundreds of ALS DNA samples, while pairing this information with patient clinical history and more. We are pleased to note that Tom Maniatis, PhD, one of the NYGC’s original founders and renowned ALS researcher, was recently appointed Scientific Director and Chief Executive Officer of the NYGC.

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Every Walk: Help Kids4Cure Hit the $1 Million Mark

In 2004, Paul Carey Jr. was 13 years old, and his brother Christian was 11. The boys were both active in all kinds of extracurriculars. Paul was a passionate hockey athlete and Christian a talented young actor, and both excelled at schoolwork.

One Friday in May 2004, their world turned inside-out. As they sat on their living room couch in their Cincinnati, Ohio home, their parents explained to them that their mother, Lorri, had been diagnosed with ALS. Lorri was 38 years old.

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Every Bright Young Scientist: Meet Dr. Veronique Belzil

Meet Dr. Veronique Belzil, an Assistant Professor in the Department of Neuroscience at Mayo Clinic College of Medicine in Jacksonville, Fla., and a former ALS Association Milton Safenowitz Postdoctoral Fellow. Having been personally touched by ALS, she is extremely dedicated to finding treatments and ultimately a cure for this devastating disease.

Her work focuses on sporadic ALS, which is a type of ALS that is not genetically inherited and accounts for approximately 90% of all ALS cases. We are proud to report her recent successes of identifying new ALS genes and disease pathways that can be targeted for developing potential ALS therapeutics. This important work was published in August in the journal Acta Neuropathologica. Read more about Dr. Belzil’s extraordinary work, her vision for the future of ALS research, and what she is up to now.

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Every Principal Adds Up: Meet Gene Connolly Featured in the New ALS Documentary “Mr. Connolly Has ALS”

Last month, we were honored to be a part of the premier “Mr. Connolly Has ALS,” a new documentary following Gene Connolly in his final year as Concord High School Principal. The film exuded Mr. Connolly’s bright energy and love for life, despite his ALS diagnosis in 2014. While serving as Principal for 14-years, he emphasized kindness and compassion and made a point to forge personal relationships with many of the school’s 1,600 students.

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Every Accountant Adds Up

Meet Howard B. Levy, a highly accomplished certified public accountant with a national reputation and a long history of involvement with and support for The ALS Association. He learned of the Association during the mid-1980s during the last year of the life of his dear father, Jack Levy, who had ALS. Howard offered to serve as a member of the Association’s Board of Trustees and because of his skill as an accountant, was soon invited to fill a vacancy as its national treasurer. He served in that role for almost seven years, during which time the Association was a small national charity whose annual contributions barely achieved $5 million. Nevertheless, Howard was responsible for making substantial improvements in the Association’s internal and public financial reporting processes and internal controls, including its budgeting, the latter of which led to a significant enhancement in its financial condition. Howard later served for a time on the Board of Trustees of the Nevada Chapter. Howard continues to consider his service as national treasurer the most important thing he has ever done. It was this service that inspired him to write The Volunteer Treasurer’s Handbook: Financial Management Building Blocks for Not-for-Profit Organizations (available free at, which in its original edition was intended only for use by Chapter treasurers.

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Every Legacy Adds Up: Meet the Barnetts

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Perhaps no family has had as great an impact, for as long a period of time, in the fight against ALS as the Barnett family.

Larry Barnett, Sr., served as the founding chairman of The ALS Association, which was formed when the ALS Society of America (of which Barnett was chairman) merged with the National ALS Foundation in 1985.

“There’s so much more strength in unity,” said Barnett, Sr., who served as The ALS Association chairman for four years. “We can do so much more working as one.”

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