Sons of HD was formed in 2010 by its principals, Brian Falciglia, Scott Falcigila and Andrew McDermott (the “Sons”). Scott and Brian lost their mother, Alice Falciglia, to HD in February 2008. Since diagnosis, Alice gradually lost the ability to do everyday things, from driving a car, to speaking and eventually walking. Driven by the fear of a similar fate, and joined by their companion Andy, the three are determined to fight this disease…and win. But we’re not alone!
Part of Sons of HD’s philosophy for raising funds and awareness is crowd participation and interaction. In 2009, the Sons coordinated a fundraising effort in connection with a triathlon they signed up for. They were overwhelmed with the amount of donations received ($10,000), their supportive corporate sponsors, and all the friends who woke up at 5:30am to see them race and didn’t sleep until the party stopped the next day! The racing effort was called “Tri for Alice”, and this year is over 30-strong.
Sons of HD is also open to networking for HD families and friends. We don’t have a “support team” set up (…yet?) but we’re happy to take e-mails from anyone looking for support with HD and we’ll do our best to provide support, advice or just listen.