RareVoice Awards Gala to Honor Congressional Staff & Patient Advocates in Oscar Style Award Ceremony
Restaurateur Fabio Beggiato, who has been fighting the rare disease Mastocytosis for 2 years now (he was diagnosed finally last year via a study done by NIH), is also the owner and chef of The Darlington House.Â If you are a Washingtonian, chances are you have eaten at one of his restaurants (former owner of Sesto Senso), or at least met Fabio, his children and his beautiful energetic wife Patricia.Â When we learned of Fabio’s rare disease and the type of pressure and pain it was putting him and the entire family through, it was shocking.Â Even more moving however, was the work his daughters and Patricia did to make changes and bring full on awareness to the world of Rare Disease.
For the advocacy work Patricia did when hosting Rare Disease Legislative Advocates (RDLA) ï¬rst Lobby Day to advocate for the ULTRA/FAST & Creating Hope Act, she has been nominated as a RareVoice Awards Gala Patient Advocate nominee.
RDLA will host the inaugural RareVoice Awards Gala to honor and thank Members of Congress, Congressional Staff and Patient Advocates for their advocacy to ensure The Food and Drug Administration Safety and Innovation Act (FDASIA), S.3187 included provisions that spur the development of lifesaving treatments for rare disease patients. To read more about the rare disease provisions: http://rareadvocates.org/president-signs-new-legislation/
John Crowley, Parent Advocate and President of Amicus Therapeutics, will emcee the RareVoice Awards. Crowleyâ€™s involvement stems from the 1998 diagnosis of two of his children with Pompe disease-a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he became an entrepreneur as the cofounder, president of a biotech start-up conducting research on a new experimental treatment for Pompe disease. The major motion picture, Extraordinary Measures, starring Brendan Fraser and Harrison Ford, is inspired by the Crowley family journey.
Event sponsors include: Genzyme, PhRMA, Alexion and Shire.
Award winners will be announced live at the Ceremony in Oscar-style form … and we at the Punch wish Patricia, Fabio and the entire Beggiato family the best of luck.
Wednesday, November 14, 2012
1101 Sixth Street, SW, Washington, DC 20024
6:00 pm Champagne Cocktail Reception
8:00 pm Awards Ceremony
Awards will be presented to Members of Congress, Congressional Staff and Patient Advocates for championing rare disease legislation that was included into The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187
9:00 â€“ 10:30 pm After-Party Celebration
Pamela Lynne Sorensen is the founder of Pamela’s Punch, a platform for profiling people who "make it happen" in the Capital region, reviews & topical blog posts. She launched Punch Enterprises, a connector consulting business in 2015 and Pacific Punch based in LA, in 2012. Pamela comes from an extensive background in sales and business development from a variety of industries, has been involved with charities and fundraising for a number of years and holds several Board and leadership positions. She currently resides in Arlington, VA. Follow her on Twitter at @pamelaspunch.