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Board of Directors

Angela Ramirez Holmes
President

 Angela Ramirez Holmes started her advocacy in rare diseases in 2013 when her then 8 year old son Andrew was diagnosed with a rare brain condition, an arteriovenous malformation or AVM. In the short time since, she and her family have raised over $10,000 for The Aneurysm and AVM Foundation and collected hundreds of toys for UCSF Benioff Children’s Hospital Oakland. Angela is the Principal of Alliance Campaign Strategies, a political consulting and public affairs firm working on local campaigns and issues. Angela has nearly twenty years of political and legislative experience on the national, state, and local levels including serving as District Director to Assemblymembers Nancy Skinner and Bob Wieckowski and on the staff of Congresswoman Ellen Tauscher. She is also an elected official, currently serving her second term on the Board of the Zone 7 Water Agency. Angela graduated from Saint Mary’s College of California with a B.A. in Politics and U.S. History. 

 

Julia Jenkins
Treasurer

Julia Jenkins served as the Director of Public & Government Relations when the EveryLife Foundation for Rare Diseases was founded in 2009.  In 2013, Ms. Jenkins became the Executive Director, a position she still holds.  Her background in grassroots organizing, and legislative advocacy helped unite more than 180 patient organizations under the CureTheProcess Campaign.  She worked to ensure ULTRA/FAST was included in the 2012 FDA Safety and Innovation Act (FDASIA).  Julia initiated RDLA to serve as a communication platform for rare disease stakeholders to work on legislative issues and to help elevate the voice of rare disease patients on Capitol Hill.  Prior to working at the EveryLife Foundation for Rare Diseases, she worked as a Political Communications Consultant with the Lew Edwards Group, creating strategic plans to organize communities to support local funding measures.  Julia was Legislative Director and registered California State lobbyist for Public Employees Union Local #1.  She led efforts for the San Francisco Democratic Party, helping to defeat the anti-labor propositions in the 2005 Special Election and worked for House Minority Leader Nancy Pelosi.  Prior to working in politics, she was a fundraiser for the Muscular Dystrophy Association.  Julia did her Masters work in Political Science at San Francisco State University and her undergraduate work in Communications at St. Mary’s College of California.  She also serves on the Board of Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc.  

 

Kim Mooney
Secretary


Kim Hart Mooney, MS, CGC, is currently an Associate Director of Patient Advocacy at Ultragenyx Pharmaceutical Inc where she has the opportunity to interact with global Patient Advocacy Groups across a broad spectrum of rare diseases to learn more about the conditions that the face and how they impact their lives. Kim is a Certified Genetic Counselor who previously worked at Kaiser Northern California and the University of California, San Francisco to help people understand their family medical history of genetic disorders and make informed healthcare decisions. In addition, she worked as a Study Coordinator at UCSF and a Clinical Reasearch Associate at BioMarin managing clinical trials for people with rare diseases, and educating people about participation in trials.

 

California Action Link for Rare Diseases Inc. (CAL RARE), 1811 Santa Rita Road, Suite 224, Pleasanton, CA 94566

CAL RARE is a registered 501(c)(3) non-profit organization #81-5461840
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