This week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
Raymond Brooks has worked with West Virginia Senate and House members and Governor Jim Justice to advocate for rare disease patients. He helped get Senate Bill(SB) 339 passed to establish the Commission on Chronic Pain Management. Once passed by the Senate, he worked with Governor Justice to sign SB339 into law. Raymond also worked with Governor Justice to write a proclamation making July 2017 in observation of Arachnoiditis Awareness Month. This is the first time in history that West Virginia proclaimed any period of observance for this rare and painful chronic disease.
Angela Ramirez Holmes is the President of the California Action Link for Rare Diseases (CAL Rare), a non-profit dedicated to providing a common voice for rare disease patients in California. She started her advocacy in rare diseases when her then eight year-old son Andrew was diagnosed with a rare brain condition, arteriovenous malformation (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. In 2017, Angela launched CAL Rare to bring together stakeholders to raise awareness among the general public and decision-makers regarding rare diseases.
Barby Ingle advocates for all challenged with a chronic condition involving chronic pain and rare disease. She does this for patients like her, as well as their families, caregivers, healthcare professionals and the public. Through her activities for International Pain Foundation, Consumer Pain Advocacy Task Force (CPATF), State Pain Policy Advocacy Network (SPPAN), RDLA and the 16 other coalitions she partners with, she is fighting daily for patients’ right to proper and timely access to care, open access to treatment, and bio-psycho-social advances in care, in-person and online. Barby advocates for chronic awareness to help the invisible become visible so that patients can learn how to participate fully in society.
Anna Payne is a 30-year-old person with cystic fibrosis (CF) who is working on accomplishing her dreams every day. Her passion is for helping to raise awareness and support for those with rare diseases, and her favorite activity is advocacy work. In the past year, she has done her best to voice her concerns and raise awareness for the CF community. She sat down with her local Congressman and Senator, and traveled to the state capitol to speak with various legislators. She has been featured in her newspaper, and an article on philly.com. She does all of this while working full time at a local credit union. She believes that the only way to make a difference is to get involved, to stand up, and raise her voice.
After her first grandson was unexpectedly diagnosed with severe hemophilia B, Darlene Shelton discovered protocols prohibiting paramedics/emergency room (ER) doctors from administering medications carried by rare disease patients. Realizing the danger, she stepped into action creating the Danny’s Dose Alliance and embarked on a journey to spur change. Starting in Missouri working with the EMS Association, Darlene realized the problem pertains to all patients with special medical needs for treatment or medications. The problem appeared to be conflicting protocols, fear of liability and education. The organization’s three main goals became changing protocols, assisting with paramedic/ER education and providing families with education. Danny’s Dose successfully passed Emergency Medical Service (EMS) Protocol legislation in Missouri within two years and is currently assisting with education.
Join the celebration to recognize advocates like these on November 15th in Washington, DC! Free registration for the RareVoice Awards is available here.