On March 13, 2011 Nancy’s 27 year old son Peter was diagnosed with ALS, Lou Gehrig’s disease. Their world changed in a moment. They were told that there is no treatment or cure and the prognosis was 2-5 years. Since that day, Nancy has immersed herself in the ALS community.
Through her education and work experience, she knew that the best way to become knowledgeable and currently informed on the disease was to get to know the players and the institutions that were on the forefront on this disease. In the past 3 years Nancy has traveled and networked to the offices of CEO’s, Senators, Congressmen, Top Doctors and governmental authorities. She has testified in Washington DC to an FDA panel and has initiated and executed petitions regarding important issues affecting the ALS communities. Nancy has developed strong relationships with executives at both the local and national levels of ALS organizations involved in research, patient support, advocacy and fundraising.
Nancy along with other family members runs the Pete Frates #3 Fund. This fund, started by a group of her family and friends, raises funds to aid Pete in his battle with the disease. After Pete’s diagnosis they learned that as the disease progresses, the average cost for an ALS patient to live with the disease is $280,000 per year. Team Frate Train, as Pete’s supporters are known, have grown over the past couple of years. They have a website, sell Frate Train Gear and run marquee events for the fund as well as supporting ALS organizations through their events.
August 2014, Nancy’s son Peter along with their family and supporters inspired the ALS Ice Bucket Challenge to go viral, raising $220 million for the ALS Association and its global partners. During that August and the months following, Nancy has done many domestic and international television, magazine and website interviews. She has also been speaking at many events both domestically and internationally inspiring others with their story and continuing the momentum created for their cause, ALS.
The Spring of 2015 has brought many speaking opportunities for Nancy including commencement speeches at Hult International Business School and Endicott College where she received an Honorary Doctorate of Humane Letters. She is also on the National Board of Trustees of the ALS Association. Presently she is working with Collaboration for a Cure, a group of the top 20 ALS organizations who meet regularly to collaborate on issues affecting the disease community.
Presently, Nancy along with the ALS Association and this group are working with Facebook and other corporate sponsors to bring back the IBC in August 2015. The new hashtag #everyAugustuntilacure represents Nancy and the community’s commitment to their mission.