Federal Advocacy – Government Agency

Dr. John Gallin, Director, National Institutes of Health Clinical Center,
Contributions to Clinical Research in Rare Diseases

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,

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)

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,
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),
Rare Disease Education of Utah State Legislators

State Advocacy – State Legislator

Becky Carney, North Carolina State Legislator
Established North Carolina Advisory Board for Rare Diseases

Dr. Richard Pan, California State Legislator
Advocate for Newborn Screening

Eric Schmitt, Missouri State Legislator
Advocate for Mental Health Legislation

2016 Nomination

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 RareVoice 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
Williams & Jensen

Mark Dant
Executive Director
National MPS Foundation

Mark Lenker
U.S. Government Relations and Public Policy Lead
Shire Pharmaceuticals