The ALS Therapy Development Institute is proud to announce its 2018 Leadership Award recipients. This year, ALS TDI will honor Jeff Swick & The PHAALS Foundation, Chris Curtin, Patty Haberstroh, and Cory Burell for their leadership in the quest to end ALS. The honorees were chosen from scores of nominations received from the broad ALS community throughout 2018.
Jeff Swick & PHAALS Foundation – Fran Delaney Challenge & Respect Award
Jeff Swick of Fort Jennings, Ohio created the Playing Hardball Against ALS (PHAALS) Foundation in 2012 to support people with ALS and their families. Since then, the Foundation has raised well over $500,000.00, providing physical, emotional and financial support to over 100 ALS families in Ohio and 14 other states. The PHAALS Foundation helps support ALS families through three patient service programs: The Diamond Dreams Program, the Legends Scholarship Program and the Hall of Fame Research Grant. Jeff is the Founder and CEO of the organization, working to organize dozens of events each year to fund and support the important work of the PHAALS Foundation; as they support patients and families living with ALS now and in the future. Jeff and PHAALS have been committed to ALS research at ALS TDI through their HOF Research Grant and philanthropic support, as they continue to fight for and support the ALS community.
Chris Curtin – Mary Lou Krauseneck Courage & Love Award
Larchmont, New York resident Chris Curtin began working hands-on with people with ALS in 2004; when Claire Collier was diagnosed with ALS, Chris became one of her caregivers and continued to do so throughout Claire’s five-year journey with the disease. Since then, he has not stopped helping others with ALS. He was a founding board member of the MAC Angels Foundation, and served as board President for four years until stepping in the Services Director position in 2014. In this role he together with his MAC Angels Foundation colleagues, provide direct patient advocacy at ALS clinics, social worker support, access to a loaner closet of equipment and much more. Chris is also a regular participant in ALS TDI events, including the annual Tri-State Trek, riding 270 miles and raising funds for research.
Patty Haberstroh – Stephen Milne Adventurous Spirit Award
Patty Haberstroh lives in Westport, Connecticut. She was diagnosed with ALS in October 2017, and shortly thereafter, she and her family kicked off the “ALS Pepper Challenge,” a viral social media campaign that raised ALS awareness globally, and over $600,000 for ALS research at ALS TDI! Thousands of people around the world took the challenge, including celebrities like Andy Cohen, Kelly Clarkson, Garth Brooks and Trisha Yearwood, Jake Tapper and Jimmy Kimmel, to name just a few! Patty is the mother of four and is expecting the birth of her sixth grandchild before the end of 2018.
Cory Burell – Stephen Heywood Patients Today Award
Cory Burell is from Wake Forest, North Carolina. He was diagnosed with ALS in February of 2017 when he was just 33 years old. Father to Hunter and Garrett, and husband to Alison, Cory knew right away that he was going to fight. His father, too, had battled ALS, passing more than 25 years ago. Armed with this information, he sought genetic testing, began aggressive research of his own, and became active and well known through online communities on Facebook and the ALS Forum (as “wburell”). Cory has been part of several clinical research programs, including a late-stage trial on NP001, and later on an experimental antisense therapy from Ionis/Biogen specifically designed to target the genetic issues of those, like Cory, with mutations in the gene SOD1. Cory has stayed deeply involved in ALS advocacy as well, collating feedback from the ALS community on trial design and sharing it with drafters of new clinical trial design standards being set by the FDA. He has also become deeply involved in ALS TDI science through its Precision Medicine Program as well as through fundraising, including a Skeeball Tournament. The Burell Family lives in Wake Forest, North Carolina.
“The battle against ALS takes a lot of leadership and support. This year’s awardees include two individuals from organizations that provide tremendous on the ground support to people with ALS and their families. It also includes two incredible people with ALS, Cory, and Patty, who have become very well-known in the ALS community, albeit for very different reasons. On behalf of the entire ALS community, it will be our privilege to recognize all four of these individuals at this year’s Leadership Summit in Boston,” said Steve Perrin, Ph.D., President & CEO of the ALS Therapy Development Institute.
To join the community in recognizing these individuals, please attend the Leadership Summit in person or online. More information at www.als.net/summit.