[2014 Year in Review] Family is everything www.hdsa.org 7 8 9 10 11 12 13 14 15 4 5 6 16 1 2 3 7 18 ry 1 1 2 3 4 5 6 7 8 9 10 19 2 nua ebruary 11 12 0 2 Ja F 13 1 1 2 March 1 2 3 4 5 4 1 2 6 7 8 5 1 23 9 10 6 1 24 April 11 7 1 2 1 2 3 12 8 5 4 5 6 13 19 26 7 14 2 2 M 8 9 1 0 7 ay 1 5 21 2 1 2 0 1 16 8 3 1 22 2 4 1 1 9 5 2 7 2 6 1 1 3 30 Ju 7 3 8 ne 8 1 1 24 3 1 9 4 9 1 2 1 2 3 10 5 20 5 4 2 11 1 2 6 J 5 6 1 ul 6 1 1 2 y 2 7 2 7 1 7 2 505 Eighth Avenue, Suite 902, New York, NY 10018 2 1 1 2 8 3 8 2 8 3 9 3 1 1 (800)345-HDSA | www.hdsa.org A 4 1 4 9 2 u 5 0 4 1 2 g 1 5 2 u 6 1 0 s 1 5 t 7 2 1 6 1 1 2 8 2 6 1 S 2 2 9 1 7 6 27 28 2 e 2 2 2 9 p 3 3 0 5 3 1 1 7 3 2 0 t 3 e 4 0 1 8 2 4 2 9 2 1 m 3 4 2 5 1 1 8 3 b 1 2 8 2 O e 1 9 6 4 2 2 c 5 2 r 9 1 2 t 2 o 7 2 2 7 1 1 0 3 b 5 2 1 6 8 1 0 e 2 2 2 N 6 r 3 2 1 1 9 2 o 3 3 6 0 7 1 v 1 1 2 2 1 e 5 4 4 2 D 1 2 2 0 2 m 7 9 8 e 5 1 2 1 3 1 b c 1 4 2 5 3 1 e 3 e 1 6 2 8 8 m 4 9 r 1 1 2 0 1 7 3 b 2 6 1 5 4 2 3 2 2 e 7 9 0 8 r 2 1 1 6 2 9 1 2 7 3 5 2 1 2 9 2 3 6 3 7 0 1 1 1 2 2 8 1 1 4 1 8 8 2 5 6 2 2 0 3 4 1 5 2 9 1 4 0 7 1 2 4 1 6 2 9 2 1 1 5 1 2 7 5 0 3 7 6 3 9 6 1 2 1 1 2 7 1 2 2 8 1 0 2 8 1 2 6 8 9 1 8 1 1 1 0 9 5 1 4 1 2 2 1 1 1 2 7 3 0 1 1 2 7 2 9 4 1 6 0 1 2 1 1 5 1 2 3 1 5 1 2 1 4 3 1 4 3 3 1 3 2 8 2 9 2 1 0 1 4 2 2 6 5 2 1 2 1 5 3 9 8 3 1 1 2 1 2 2 6 1 6 0 2 1 2 7 9 7 2 1 1 8 7 1 0 2 4 7 2 6 2 1 2 2 8 8 1 5 1 5 2 9 2 4 2 2 2 0 2 3 2 2 2 1 2 2 9 6 2 3 3 2 2 4 7 0 2 1 5 3 2 2 0 6 3 8 2 9 7 2 2 8 2 9 3 0 3 1 “Because of your generosity, HDSA is advocating, educating and researching to bring the awareness, understanding and answers that improve the lives of everyone affected by Huntington’s disease. We had an amazing year in 2014 reaching more people with our mission work than ever before. We look forward to all of the help and hope that this new year will bring as we work together to support every family touched by HD. Thank you for being a part of the HDSA family!” – Louise Vetter, HDSA Chief Executive Officer Board of Trustees Leadership Jang-Ho Cha, MD, PhD Steven Seekins Donald Higgins, MD Louise Vetter Debra Lovecky Chairman of the Board Past-Chair Jennifer Leyton Chief Executive Officer Director, Programs & Advocacy Arik Johnson, Psy.D Claudia Adkison, JD, PhD Bill Kline Nadene Alleyne Chair-Elect Director, Finance & Nancy Rhodes Hugh Deloayza Rob Millum Administration Director, Field Development Larry Fisher Gerald Francese, Esq. Arvind Sreedharan Treasurer Christopher Cosentino & Operations Samuel Frank, MD Dan Vandivort Director, Marketing & George Yohrling, PhD Barbara Jacobs Michelle Gray, PhD David Waltermire Secretary Communications Director, Scientific & Medical Affairs 7 8 9 10 11 12 13 14 15 4 5 6 16 1 2 3 7 18 ry 1 1 2 3 4 5 6 7 8 9 10 19 2 nua ebruary 11 12 0 2 Ja F 13 1 1 2 March 1 2 3 4 5 4 1 2 6 7 8 5 1 23 9 10 6 1 24 11 7 2 12 18 5 13 1 26 1 9 4 20 27 15 2 2 1 1 8 6 2 2 1 2 9 7 2 1 3 30 Ju 8 n 1 24 3 e 1 9 1 2 2 3 20 5 4 2 2 6 5 1 6 2 2 7 2 7 8 2 2 3 8 9 1 2 0 4 1 2 1 5 1 2 2 6 Family is 1 2 everything 3 7 1 2 4 Huntington’s disease is the quintessential family disease. With more than 30,000 symptomatic Americans, children of a parent with 8 1 2 5 HD have a 50/50 chance of inheriting this fatal brain disorder. There are more than 200,000 people at risk across the United States 9 1 3 6 0 and there is currently no cure, which is why we need your help today! 1 3 7 1 1 8 At the Huntington’s Disease Society of America, Family is everything. 1 9 2 HDSA is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. 0 2 From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope 1 2 2 for tomorrow for people with Huntington’s disease and their families. 2 3 2 4 When dealing with Huntington’s disease, no one fights alone… 2 5 2 6 2 7 2 8 2 9 3 0 VOLUNTEER. EDUCATE. ADVOCATE. DONATE. HDSA.ORG | (800)345-HDSA Freeze HD Event .................................................. 4 Marathon Team ................................................... 5 Team Hope .......................................................... 8 The Lion’s Mouth Opens ...................................... 4 29th Annual Convention in Louisville ................... 6 Advocacy ........................................................... 10 San Diego Celebration ......................................... 4 16th Annual Ride for the Cure ............................... 6 2014 Research ................................................... 12 NYC Family’s 600-Mile Bike Ride.......................... 5 Strike Out HD....................................................... 7 HD Support ....................................................... 13 TABLE OF TABLE Jason Evans Treks More Than 2,600 Miles ............ 5 Pie in the Face Challenge ..................................... 7 Guidelines for Finding a Nursing Home ............. 14 CONTENTS Family is everything. | 3 Freeze HD Event Raises More Than $100,000 On February 22nd, Jason Ritter, Tyler Ritter, Bryce Dallas Howard and Simon Helberg came together to support their friend Marianna Palka and her film The Lion’s Mouth Opens at the star-studded Freeze HD event in Los Angeles. The spectacular sold out event had a silent auction with amazing prizes such as a lunch with Bryce Dallas Howard and her famed director dad Ron Howard, tickets to see The Big Bang Theory and much more. The event raised more than $100,000 for HDSA. Pictured: Marianna Palka (top left), Bryce Dallas Howard (top right), Simon Helberg & Jason Ritter (bottom left) The Lion’s Mouth Opens The Lion’s Mouth Opens is a short documentary by director Lucy Walker featuring filmmaker Marianna Palka. Marianna’s father suffers from HD and she documented her journey through the testing process. Marianna’s close friends, Jason Ritter & Bryce Dallas Howard, are also in this powerful film. The Lion’s Mouth Opens was considered for Academy Award nomination and will air on HBO during National HD Awareness Month in May 2015. San Diego Celebration of Hope Raises $112,000 The HDSA San Diego Chapter honored former SD Charger Rolf Benirschke on October 17th at the 2014 Celebration of Hope and netted $112,000! The gala was attended by professional athletes, civic leaders, celebrities and featured a very entertaining coaches’ roundtable from the top three sports organizations in San Diego: Buddy Black (SD Padres) ; Steve Fisher, (SD State University men’s basketball); and Mike McCoy (SD Chargers). Mark Grant, sports personality on Fox Sports San Diego, was the event’s emcee. Special thanks to event founder and Board Member Bill Johnston. Pictured Above: HDSA San Diego Board Pictured Left: (l to r) Mark Grant, Mike McCoy, Buddy Black and Steve Fisher 4 | hdsa.org Help for today, hope for tomorrow. NYC Family’s 600-Mile Bike Ride to Toronto Raises $20,000 The Methot family from New York City wanted to go the extra mile to raise funds and awareness for Huntington’s disease; make that an extra 600-miles! The Family of four jumped on their bicycles and made their way from Manhattan to Toronto, Canada braving high volume traffic, flat tires and inclement weather.