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Rare Disease Legislative Advocates Is Pleased to Host the 4Th Annual Rare Disease Legislative Advocates is pleased to host the 4th Annual Presented by Hosted by Wednesday, November 4, 2015 6:00 pm Cocktail Reception ~ 8:00 pm Awards Ceremony ~ 9:00 pm After-Party Celebration Arena Stage, 1101 Sixth Street, SW, Washington, DC Lifetime Achievement Lifetime Achievement Congressional Leadership Congressional Leadership Congressional Leadership Dr. Stephen Groft, NIH Hon. Fred Upton Hon. Diana DeGette Hon. Gus Bilirakis Hon. G.K. Butterfield Meet the 2015 Abbey Nominees Abbey recipients will be announced live at the Gala Congressional Staff Carly McWilliams, House Energy and Commerce Committee Saul Hernandez, Officeof Representative G.K. Butterfield Clay Alspach, House Energy and Commerce Committee Harrison Matheny, Office of Representative Ryan Zinke Molly McDonnell, Office of Representative Leonard Lance Sara Mabry, Office of Senator Bob Casey Patient Advocate Nominees Ronald Bartek, Friedreich’s Ataxia Research Alliance Federal Level Advocacy Woody Crouch, Sturge-Weber Foundation Rob Whan, Caleb’s Crusade Dr. Annette Bakker, Children’s Tumor Foundation Noah Coughlan, Run for Rare Steve Walker, Abigail Alliance Steve Smith, National MPS Society Lisa and Max Schill, RASopathies Network Patient Advocate Nominees Sharon King, Taylor’s Tale State Level Advocacy Kirsten Norgaard, Adrenal Insufficiency United Elisa Seeger, Aidan Jack Seeger Foundation Bruce Thompson, ALS Parent Advocate Patricia Weltin, Rare Disease United Foundation Thank you to our Gala Sponsors www.RareVoiceAwards.org Rare Disease Legislative Advocates is pleased to host the 5th Annual Presented By Hosted by Lifetime Achievement Federal Agency Advocacy Congressional Leadership Hon. Orrin Hatch John Gallin, MD, NIH Hon. Joseph Crowley Wednesday, November 16, 2016 6:6:00 pm Cocktail Reception ~ 6:30 pm Congressional Toast 8:00 pm Awards Ceremony ~ 9:00 pm After-Party Celebration Arena Stage, 1101 Sixth Street, SW, Washington, DC Meet the 2016 Abbey Nominees Abbey recipients will be announced live at the Awards Federal Advocacy: Congressional Staff Federal Advocacy: Patient Advo- Nico Janssen, Office of Senator Maria Cantwell Teresa Barnes, Coalition for Pulmonary Fibrosis Molly McDonnell, Office of Representative Leonard Lance David Fajgenbaum, MD, Castleman Disease Collaborative Network Matthew Richardson, Office of Senator Orrin Hatch Jill Levy-Fisch, Save Babies Through Screening Foundation Sarah Lloyd Stevenson, Office of Senator Roger Wicker Christina and Matt Might, Parent Advocates Grace Stuntz, Senate HELP Committee Staff Tracy VanHoutan, Noah’s Hope Andrew Vogt, Office of Senator Mark Kirk State Advocacy: Patient Advocate State Advocacy: State Legislator Barby Ingle, International Pain Foundation Becky Carney, North Carolina State Legislator Sharon King, Taylor’s Tale Richard Pan, MD, California State Legislator Sabrina Low-DuMond, Parent Advocate Eric Schmitt, Missouri State Legislator Dominick Spatafora, Neuropathy Action Foundation Gina Szajnuk, Rare & Undiagnosed Network RareVoiceAwards.org *Due to popular demand, registration for this event is now closed. ThankThank you to You our to Gala Our Sponsors Co-Spon- Rare Disease Legislative Advocates is pleased to host the 6th Annual Presented by Awards We are honored to present our Rare Disease Caucus champions with Congressional Leadership awards Honorable Amy Klobuchar Honorable Leonard Lance Wednesday, November 15, 2017 6:00 pm Cocktail Reception ~ 6:30 pm Congressional Toast 8:00 pm Awards Ceremony ~ 9:00 pm After-Party Celebration Arena Stage, 1101 Sixth Street SW, Washington, DC Meet the 2017 Abbey Nominees Abbey recipients will be announced live at the Awards Federal Advocacy: Congressional Staff State Advocacy: Patient Advocate Morgan Brand, Legislative Aide, Office of Senator Chuck Schumer Raymond Brooks, Patient Advocate Remy Brim, Senior FDA Policy Advisor, Senate HELP Committee Angela Ramirez Holmes, CAL Rare Stuart Portman, Health Policy Advisor, Senate Finance Committee Barby Ingle, International Pain Foundation Thomas Rice, Legislative Assistant, Office of Representative Michael McCaul Anna Payne, Patient Advocate Polly Webster, Health Policy Director, Office of Representative Diana DeGette Darlene Shelton, Danny’s Dose Alliance Federal Advocacy: Patient Advocate State Advocacy: State Legislator Lana Clay, University of Southern California Senator Lauren Book, State of Florida Heather Ferguson, Lymphedema Advocacy Group Representative Becky Ruth, State of Missouri Paul Fogelberg, Pulmonary Fibrosis Advocates State Advocacy: Teen Advocate Sharon Rose Nissley, Klippel-Feil Syndrome Freedom Taylor Kane, Run for ALD Federal Advocacy: Teen Advocate Ian Mignone, Patient Advocate Adam Foye, Team Titin Emily Muller, Emily’s Fight Shira Strongin, Sick Chicks RareVoiceAwards.org *Due to popular demand, registration for this event is now closed. Thank You to Our Sponsors WITH FEWER THAN 300 FDA-APPROVED TREATMENTS FOR 7000 RARE DISEASES, THERE IS STILL WORK TO BE DONE IN WASHINGTON TO HELP THE 30 MILLION AMERICANS WITH RARE DISEASES. 325 ADVOCATES ARE ON CAPITOL HILL TODAY IN SUPPORT OF LEGISLATION THAT WILL BRING SAFE, EFFECTIVE AND AFFORDABLE TREATMENTS TO PATIENTS. Association of Congenital Diaphragmatic Hernia Research Cystic Fibrosis Research, Inc. Hope For Dante A Cure for Ellie Cystinosis Research Network Hope for Gabe ADNP Kids Research Foundation Danny’s Dose Alliance Hydrocephalus Association MEET RACHEL FROM Adrenal Insufficiency United Dyskeratosis Congenita Outreach INADcure Alpha-1 Foundation Ehlers-Danlos National Foundation International FOP Association WORCESTER, MASSACHUSETTS: Alport Syndrome Foundation Ehlers-Danlos Syndrome Wellness International Pain Foundation American Bechet’s Disease Association EmesARMY International Pemphigus and Pemphigoid Foundation With her beautiful smile and contagious American Porphyria Foundation Emily’s Fight International Waldenstrom’s Macroglobulinemia Foundation Amyloidosis Foundation EveryLife Foundation for Rare Diseases Jonah’s Just Begun laugh, Rachel has mastered the ability to Amyloidosis Research Consortium FD Warriors KCNQ2 Cure Alliance Axis Advocacy Fibrodysplasia Ossificans Progressiva Association Kids Conquering Sickle Cell Disease Foundation Bardet Biedl Syndrome Family Association Fibromuscular Dysplasia Society of America KIF1A.org brighten your day. Due to Canavan disease, Batten Disease Support and Research Association Fibrous Dysplasia Foundation Let Them Be Little X2 Foundation Bohring-Optiz Syndrome Foundation Florida Cancer Specialists Foundation Li-Fraumeni Syndrome Association she cannot walk or talk and takes all of her Bridge The Gap Syngap Education & Research Foundation Foundation for Sarcoidosis Research Lipodystrophy United Chloes Fight Foundation Foundation to Fight H-abc Little Kids Big Dreams nutrition through a feeding tube. Rachel CLOVES Syndrome Community Friedreich’s Ataxia Research Alliance Little Miss Hannah Foundation Connecting Families Urea Cycle Disorders Foundation Global Genes Living LFS is waiting for a gene therapy trial that has CureAHC Gold Rush Cure LMSarcoma Direct Research Foundation cureCADASIL G-Pact MLD Foundation promise to cure Canavan, but without CADASIL Association HemoAwareness Project Mo Songs for Kerry.org Cutaneous Lymphoma Foundation Hereditary Neuropathy Foundation MPS Society research grants and incentives, she may Histiocytosis Association MSUD Family Support Group CVS Speaks run out of time. Her brain will continue to MEET SCOTT FROM deteriorate, and she will die. SAMMAMISH, WASHINGTON: Myasthenia Gravis Foundation of America RASopathies Network Narcolepsy Network RI EDS Support Group National Leiomyosarcoma Foundation Rock CF Foundation Scott was diagnosed with MPS IVA at National Niemann-Pick Foundation Sarcoidosis Awareness Foundation of Louisiana National Organization for Rare Disorders Sarcoidosis of Long Island the age of 10 after years of searching for National Tay-Sachs and Allied Diseases Sarcoma Foundation of America New England Connection for PKU and Allied Disorders Sick Chicks answers. This disease can affect every NGLY1.org Sickle Cell Consortium Noah’s Hope Sickle Cell Support Services system in the body, lowers life expectancy PBCers TargetCancer Foundation Pediatric Justice Association Taylor’s Tale and often causes loss of the ability to walk Phelan-McDermid Syndrome Foundation The Bonnell Foundation Pheo Para Alliance The Cambria Lord Foundation by adolescence. Scott lives with severe Pheo Para Troopers The FH Foundation POTS Support Group of the Seacoast The Hank Kabel Sarcoma Foundation scoliosis and pain in many parts of his body. PTEN Hamartoma Tumor Syndrome Foundation The Zebra Network Pulmonary Fibrosis Foundation Timothy Syndromes Alliance Despite his challenges, he advocates for Rare Disease Hawaii United MSD Foundation Rare Disease United Foundation Williams Syndrome Family of Hope the rare disease community and will be on Rare New England Wishes for Elliott RareCancer Foundation Capitol Hill today. Join us tomorrow for a Rare Disease Congressional Caucus briefing Thursday, March 2nd, from 12 - 1:30pm in room 902 of Hart Senate Office Building #R AREDC2017 RAREADVOCATES.ORG Paid for by RDLA 380 ADVOCATES ARE ON CAPITOL HILL TODAY ADVOCATING FOR BIPARTISAN LEGISLATION TO INCREASE ACCESS TO AFFORDABLE LIFESAVING DIAGNOSTIC AND TREATMENT OPPORTUNITIES. WE ARE THE RARE PARTY AND WE ARE 30 MILLION AMERICANS STRONG! #BoldLipsForSickleCell Champions Action Network Glut1 Deficiency Foundation A Twist Of Fate Foundation Choroideremia
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