Clinical Trial: ALS Association and ALS Finding a Cure® Supported Phase II RNS60 Trial is Now Enrolling

The clinical trial to test RNS60, a new compound for the treatment of ALS, which was supported in part from a $1.0 million grant through the ALS ACT initiative funded by The ALS Association and ALS Finding A Cure®, is now actively enrolling. This randomized placebo-controlled phase II study is being run by the IRCCS Mario Negri Institute for Pharmacological Research in Milan and the ALS Center of the Maggiore University Hospital in Novara Italy. We are happy to report that the first patient was dosed in mid-July 2017.

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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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REPORT FROM HOUSTON: Home Visits

Thomas Todd is one of the hundreds of people living with ALS who was impacted by Hurricane Harvey. As Harvey approached, Thomas was able to safely ride out the storm with friends, but the hurricane had a devastating impact on his house. Harvey flooded his house with nearly two feet of water.

As part of our outreach efforts, The ALS Association Texas Chapter contacted Thomas to assess his needs. When we met up with Thomas he was waiting outside his house, unable to enter because the waters shifted the ramp into his house.

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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 http://pbtk.com/non_profit.asp#), which in its original edition was intended only for use by Chapter treasurers.

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REPORT FROM HOUSTON: Delivering Critical Supplies to Those in Need

Over the weekend, we spent a few days with Tanner Hockensmith, Executive Director of The ALS Association Texas Chapter, as he and his team were setting up their supply staging facility in Houston and visiting families in need. At the time, they had reached out to all of the people with ALS in the areas affected by Harvey, and managed to connect with most of them.

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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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