RUN is nominated for a Rare Voice Award from the EveryLife Foundation for Rare Diseases
EveryLife Foundation for Rare Diseases
Nominees
Federal Advocacy – Congressional Staff
Nico Janssen, Legislative Assistant, Office of Senator Maria Cantwell,
Lymphedema Treatment Act
Molly McDonnell, Senior Health Policy Advisor, Office of Representative Leonard Lance,
Centers for Medicare and Medicaid Reform, and Rare Disease Congressional Caucus
Matthew Richardson, Legislative Assistant for Health Policy, Office of Senator Orrin Hatch,
Rare Disease Congressional Caucus and OPEN ACT
Sarah Lloyd Stevenson, Health Legislative Assistant, Office of Senator Roger Wicker,
Muscular Dystrophy Community Assistance, Research, and Education (MD CARE) Act
Grace Stuntz, Food and Drug Administration (FDA) Policy Advisor, Senate HELP Committee Majority Staff
Biomedical Innovation
Andrew Vogt, Legislative Assistant, Office of Senator Mark Kirk,
OPEN ACT
Federal Advocacy – Patient Advocate
Teresa Barnes, Founding Board Member and Former Vice President, Coalition for Pulmonary Fibrosis,
Research and National Institutes of Health (NIH) Advocacy
David Fajgenbaum MD, MBA, MSc, Co-Founder and Executive Director, Castleman Disease Collaborative Network (CDCN)
OPEN ACT
Jill Levy-Fisch, President, Save Babies Through Screening Foundation,
Newborn Screening Legislation
Cristina and Matt Might, Parent Advocates
Precision Medicine and Early Access Policy
Tracy VanHoutan, President and Co-Founder, Noah’s Hope,
General Public Policy Legislation and Regulatory Advocacy
State Advocacy – Patient Advocate
Barby Ingle, President, International Pain Foundation
Step Therapy in California
Sharon King, President, Taylor’s Tale,
North Carolina Advisory Council for Rare Diseases
Sabrina Low-Dumond, Parent Advocate, Pompe Disease,
Newborn Screening in California
Dominick Spatafora, President and Founder, Neuropathy Action Foundation
State Exchange Insurance Reform in California
Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN),
General State Rare Disease Legislation in Utah
State Advocacy – State Legislator
Dr. Richard Pan, California State Legislator
Advocate for Newborn Screening
Eric Schmit, Missouri State Legislator
Advocate for Mental Health Legislation
Becky Carney, North Carolina State Legislator
Established North Carolina Advisory Board for Rare Diseases
2016 NOMINATION
PROCESS
This was a record year for nominations! We are thrilled about the increase in the number of advocates fighting to improve public policy for rare disease patients. While we would love to highlight every advocate’s accomplishments, due to time limitations, our judges had the difficult challenge of narrowing the nominees down to the top five candidates in each category to be highlighted during the awards ceremony.
All nominations received from the public were carefully considered among an outstanding slate of nominees. Judges took into consideration the impact of the legislative achievement to benefit the whole rare disease community, as well as the dedication, risk, collaboration and leadership that the nominee undertook to advance policy. While we are unable to highlight everyone’s important accomplishments in the awards ceremony, all nominees will be recognized in our awards program and will be VIPs at the event. We wish to thank everyone for submitting nominations. And of course, CONGRATULATIONS to all of our nominees and thank you for being the voice for rare disease families!
ABBEY RECIPIENTS WILL BE ANNOUNCED AT THE RARE VOICE AWARDS ON NOVEMBER 16, 2016.
Thank you to our Nominations Committee:
Ronald J. Bartek
Co-Founder/Founding President
Friedreich’s Ataxia Research Alliance (FARA)
David Eckstein
Senior Health Scientist Administrator
Office of Rare Diseases Research
National Center for Advancing Translational Sciences, NIH
Cheryl Jaeger
Principal
Williams & Jensen
Mark Dant
Executive Director
National MPS Foundation
Mark Lenker
U.S. Government Relations and Public Policy Lead
Shire Pharmaceuticals