Advocacy Hall of Fame - National Multiple Sclerosis Society

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Advocacy Hall of Fame

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2014 Advocacy Hall of Fame Inductees

Kelly Allegra

After her diagnosis with MS, Kelly became an energetic grassroots volunteer; she has since emerged as a persuasive activist leader and strong voice for disability rights through her tireless efforts at the local, state and federal levels. Kelly takes it upon herself to attend town hall meetings, serve as a liaison to the Independent Living Center in Orange County, New York, and schedule visits with local legislators. She worked to increase access to healthcare in New York through the expansion of Elderly Pharmaceutical Insurance Coverage (EPIC), the development of the Healthcare Exchange, Medicaid Expansion, supporting spousal refusal and opposing specialty tiering of high cost medications. She personalizes how these issues – and how MS research – can impact real families living with MS by painting the picture of her life as a mother who is concerned about her future and her ability to be there for her daughter.

Irene Burton

Motivated by her diagnosis with MS at age 21, lifelong advocate Irene uses every opportunity to speak out about and encourage funding for MS research. She faces the challenges of MS with strength and perseverance, sharing her experiences with key legislators to demonstrate why we must move toward universal design, increased MS research, and a healthcare system that provides for those less fortunate and, most importantly, the next generation. With roots in the Washington, D.C. area and experience in government, Irene and her husband, Don, are effective and dedicated activists, speaking poignantly of their passion for research – so that others do not have to face a diagnosis of MS at a young age – and inspire others to join the MS movement. Irene strives to “speak out for those whose needs are great, but whose voices may not be heard.”

Rachel Chapman

Upon her diagnosis of MS in 2004, Rachel immediately connected with the Society in order to educate herself and her family about the disease. She realizes the importance of “speaking up” and “speaking out” while building relationships with those who can make a difference, and educating them on the issues that are important to people with MS, their families and their communities. Through visits, personal connection and persistent follow-up, Rachel has received support from state and federal legislators on important policies impacting research funding, access to and quality of healthcare, long-term care and caregiving, disability rights, accessible transportation and more. Rachel and her family raise awareness on MS-related issues impacting minorities and underrepresented groups; her husband, Kevin, often joins her on advocacy visits, and one of her three grown children, Ashley, works in government relations at the Society in the Southeast.

Scott Crawford, PhD

After receiving a diagnosis of primary-progressive MS in his early 30s, Dr. Scott Crawford left his budding career as a neuropsychologist to move closer to family back home in Jackson, Mississippi. He quickly became a powerful disability rights activist, motivated by personal experience with local lack of compliance with the Americans with Disabilities Act (ADA) and limited accessible sidewalks and transportation, as well as by often unaffordable treatment for MS and unmet durable equipment needs. He summarizes his view towards life, MS and activism with, “It’s not what happens to us, it’s what we do with it.” Scott’s advancement of the MS movement’s advocacy priorities has been transformational in his community and at the state and federal levels. Scott is also an outstanding speaker, fundraiser and volunteer leader with the Society.

Philip Posner, PhD

After his diagnosis with MS in 1999, Dr. Philip Posner continued working – as a university professor, teacher and researcher – through his partial retirement and move to the Washington, D.C., area in 2004. Since moving, Phil has volunteered as a leader with the Society’s peer connections program and joined the Virginia Government Relations Committee. He volunteers as an advocacy ambassador at Walk MS and health fairs, and is vice chair of the Washington Metropolitan Area Transit Authority’s Accessibility Advisory Committee. Phil serves as a reviewer for the Congressionally Directed Medical Research Program (CDMRP) and Patient-Centered Outcomes Research Institute (PCORI), and as a patient advisor for U.S. Food and Drug Administration drug and device panels. His career in medical education and research combined with his location and passion for MS make him a powerful MS activist.

Mary Reed Spencer

When Mary Reed Spencer was 12 years old, her mother was diagnosed with MS. Passionate about the mission, Mary began volunteering with the Society in 1970 when she conducted a research survey of people with MS with the Kansas Nursing Association. She organized the first MS READaTHON in the Topeka, Kansas, area in 1978. From growing the Kansas MS Caucus to hand-delivering welcome letters to new MS Caucus members, and from securing speakers for various events to speaking herself, Mary’s passion for and leadership in activism has flourished. She has held numerous leadership positions on boards and committees, and her unflagging energy and commitment have inspired many others to join the movement. She remains highly involved in Bike MS, Walk MS, connection groups, State Action Days and more.

Robin Steinwand

Diagnosed with MS in 2000, Robin Steinwand is a passionate MS activist leader with particular interest in access to healthcare. Her lengthy career in public health and experience addressing rural care barriers provides a rare global perspective. She compellingly testified before the Maryland and Maine legislatures about the need to limit out of pocket cost for specialty tier drugs, and shared her story with the New York Times to help others understand this critical issue. Robin also tells the stories of other people with limited incomes or other barriers to healthcare who may be “falling through the cracks” of our health and human services systems. She encourages fellow volunteers to speak up and share their viewpoints to educate and appeal to lawmakers – wherever they fall on the political spectrum. Appointed to the Society’s State Activism Council in 2013, Robin provides ongoing strategic leadership.

Past Advocacy Hall of Fame Inductees

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