RareVoice Awards Gala, Washington DC

On November 14, 2012, RDLA hosted its 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.  Abbey Meyers, Founder of the National Organization for Rare Disorders, Inc. (NORD) was honored with a lifetime achievement RareVoice Award for her work to pass the Orphan Drug Act. In her honor, the award has been named an “Abbey.”

FDASIA contained many rare diseases provisions that were championed by different Members of Congress, advocates and organizations.  In order to ensure we recognize all those who made a significant contribution, our nomination process was open to the Rare Disease Community.  Click here to read about the different rare disease provisions in FDASIA.

There are two award categories: 

  • Congressional Staff/Member of Congress:  Recognizing a Congressional Staffer and the Member of Congress for taking a leadership role to ensure a rare disease provision was included into FDASIA.  (Awards will be given both to the Member and to the Congressional staffer; just one nomination per office is needed.)
  • Patient Advocate:  Recognizing a patient, parent or volunteer who took a leadership role in successfully advocating for rare disease legislation that was included in FDASIA.

Patient Advocate Nominees:

  • Patricia Beggiato, Advocate/Volunteer, Mastocytosis Society & Owner, Darlington House, nominated for hosting RDLA’s first Lobby Day to advocate for the ULTRA/FAST & Creating Hope Acts
  • Karen Durrant, RN, BSN, Patient Advocate, Founder of The NOMID Alliance, nominated for patient support and advocating for rare disease legislation
  • Nancy Goodman, Patient Advocate, Founder, Kids v Cancer, nominated for championing the Creating Hope Act
  • Tracy VanHoutanParent Advocate, Founder, Noah’s Hope, nominated for advocating for the ULTRA/FAST Act
  • Jill WoodParent Advocate, Founder, Jonah’s Just Begun, nominated for advocating for the ULTRA/FAST Act
  • Roy ZeighamiParent Advocate, Board Member, National MPS Society, nominated for advocating for the ULTRA/FAST Act

Congressional Staff Nominees:

  •  Clay AlspachHealth Counsel, House Energy & Commerce Committee, nominated for advocating for the inclusion of the ULTRA/FAST Act into FDASIA
  • Saul HernandezLegislative Director, Office of Congressman GK Butterfield (D-NC), nominated for being the lead Democratic Congressional staff champion of Creating Hope Act
  • Gary KlineSenior Policy Advisor, Office of Congressman Brian Bilbray (R-CA), nominated for advocating for the inclusion of the Creating Hope Act into FDASIA
  • James “J.P.” PaluskiewiczDeputy Chief of Staff and Legislative Director, Office of Congressman Michael Burgess (R-TX), nominated for advocating for the inclusion of the Creating Hope Act into FDASIA
  •  Tom PowerSenior Legislative Assistant, Office of Representative Stearns (R-FL), nominated for being the lead Republican Congressional staff champion of  ULTRA/FAST
  • Emily ShettyLegislative Director, Office of Representative Towns (D-NY), nominated for being the lead Democratic Congressional staff champion of ULTRA/FAST
  • Andy TaylorHealth Care Staffer, Office of Congressman Michael McCaul (R-TX), nominated for being the lead Republican Congressional staff champion of  Creating Hope Act

More information at www.RareVoiceAwards.org

 

Thank you to our Presenting Sponsor: