October 1, 2013 – CAMBRIDGE, MA – The ALS Therapy Development Institute (ALS TDI) announced today that it has elected Jennifer “Jenny” Gore Dwyer of Kenmore, WA, to its Board of Directors. Founded in 1999 with the sole mission to discover and develop effective treatments for ALS as soon as possible, ALS TDI is now the world’s largest ALS research and development program. Dwyer is part of a wave of additions to the board this year, as ALS TDI looks to grow and accelerate its drug development and venture philanthropy programs designed to end ALS. The Institute’s board has grown to include 15 members with deep ties to the ALS community and vast experience in leadership positions across multiple industries.
“I look forward to working with my fellow board members of ALS TDI, sharing our fierce determination to do all we can to find treatments for ALS. I am also proud to be the first woman to serve on the board in many years. I know first-hand that the work I do will never be quick enough for the amazing ALS community. Yet I believe - as did my husband, Pat - that ALS TDI is the most innovative, efficient and creative ALS research lab in the world. I am confident their work will lead to a treatment. I am honored and thrilled to be able to support ALS TDI with the same sense of passion, dedication and love that they provided to me and my family over the years as Pat lived with his ALS,” said Dwyer upon being elected to the Institute’s board.
Dwyer’s husband, Pat, was diagnosed with ALS in June 2005 and passed away in June 2013. The couple owned and operated a commercial fishing business, St. George Marine, which they formed in 1986. Their two vessels, the Jennifer A and the Brenna A, are involved in Alaska's commercial fishing industry. As Pat’s ALS progressed and Jenny became his full-time caregiver, the young adult Dwyer children, Sean and Brenna, stepped in to help run the business. Sean will continue Pat’s role of being the general supervisor of all things vessel-related, and Brenna will manage the business-end of St. George Marine. When the boats travel to Alaska to work, both will be on board, following the family career path. Sean will continue to fish crab in the Bering Sea in winter, and both will spend the summers working on the boats in Alaska. Jenny, Brenna and Sean plan to own, operate and grow St. George Marine in Pat’s honor.
Following Pat’s diagnosis, Jenny and her family were extensively involved in her local ALS chapter, raising over $100,000 to benefit people living with ALS (PALS) in the Pacific Northwest. She and her family also worked actively behind the scenes in Washington DC to ensure passage of the ALS Registry, which was signed into law by President George W. Bush in 2008. At this same time, recognizing the need for innovative research funding, and federal funding, Jenny was a vocal supporter of ALS TDI. She established the first National “Young Faces of ALS” Corntoss Tournament in Seattle to raise funds and draw attention to young people battling ALS. Jenny solicited sponsors, donors and participants from the family’s significant network in the region, and in 2013 the Seattle Corntoss event raised $55,000 to accelerate drug development programs at ALS TDI.
On a national level, Jenny has made several trips to Capitol Hill in Washington DC on behalf of ALS TDI. Jenny and ALS TDI met with ranking members of both the US House and US Senate to bring attention for the need to increase federal support for ALS translational drug development. Jenny, along with her family, advocates on the national level for all individuals and families living with ALS, including military service men and women who are diagnosed with ALS at a rate twice the average of other individuals.
“Pat and Jenny have been on the forefront of the battle against ALS since day one. Their love and activism has inspired thousands of other families battling ALS. We are honored to have Jenny join our board,” says Steve Perrin, Ph.D., CEO and CSO at ALS TDI. “Jenny and her family are committed to eradicating ALS, and we know she will partner well with other members of our board and leadership team to work urgently toward that end.”
About ALS Therapy Development Institute (ALS TDI)
The mission of the ALS Therapy Development Institute (ALS TDI) is to discover and develop effective therapeutics that slow or stop amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease) as soon as possible for patients today. Focused on meeting this urgent unmet medical need, ALS TDI became the world’s first “nonprofit biotech,” and employs 30 full-time professional scientists at its 26,000 sq/ft facility in Cambridge, Massachusetts. With an annual budget of $10 million, it annually screens 20-30 potential treatments at its core facility and has made more than $5 million in venture philanthropy investments to date on outside projects with potential treatments for ALS. The Institute individually funded and is executing a Phase IIA clinical trial of TDI-132 (Novartis’ Gilenya®) in ALS patients at four clinics in the United States. Built by and for ALS patients, the 501(c)3 nonprofit collaborates with global leaders in both academia and industry to accelerate ALS therapeutic development, including Biogen Idec, UCB Pharma, the Gladstone Institutes, to-BBB, Anida Pharma, MDA and RGK Foundation. For more information, please visit us online at www.als.net.