Passionate Pragmatist: Carol Head And The Fight For ME/CFS Equality: The SMCI Pt. I

 

Carol Head

 

By Cort Johnson in Health Rising.

 

As we head for International ME/CFS Awareness Day and the biggest advocacy effort that I’ve ever seen, it’s a good time to look at The Solve ME/CFS Initiative (formerly the CFIDS Association of America) – the oldest and most prominent chronic fatigue syndrome (ME/CFS) organization. For years the only ME/CFS organization with a professional staff, the SMCI has engaged in more research, advocacy and patient outreach than any other.

Carol Head came to the SMCI at an interesting time. Under Suzanne Vernon it’d been transformed into a “research first” organization which developed one of the first  Biobanks and engaged in innovative research that brought a number of new researchers to the field. Still, the organization’s collaboration with the CDC, its stance on XMRV (though correct in the long run) and some other issues had caused it to lose some support in the patient community.

Carol came to the SMCI with a strong background in both advocacy and business. Formerly the CEO and owner of Oliver’s Artisan’s breads for ten years, she held senior sales and marketing positions in several firms including eight years with the Los Angeles Times and two years with Los Angeles Olympic Committee in the eighties.

Head did not have a research background, but making a difference, particularly in the area of women’s rights, has been a key theme. Over the last 25 years, she’s been a Board Member for four different women’s organizations, one of which she helped found, including the Women’s eNews which covers women’s issues, the Los Angeles Women’s Foundation which empowers women in S. California, and Women Thrive Worldwide which advocates for women in poverty world-wide.  Carol was also a founding Board-Chair of Project Redwood that provides venture capital funds for social entrepreneurs in the developing world.

 

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