From The President
Last week I had the privilege to represent the Rocky Mountain CFIDS/FMS Association at the Organization for Fatigue Fibromyalgia Education Research (OFFER) awareness events in Salt Lake City. The feature event was Kim McCleary (President of CFIDS Association of America) speaking on CFIDS advocacy and awareness. In addition, I had the chance to visit with Dr. Bateman and the dedicated staff of OFFER.
Special Note: RMCFA October 21 educational event meeting will be featuring two previously recorded OFFER educational meetings "Research Advances in CFS and Fibromyalgia" which features Dr. Bateman. The DVD's are a great educational resource and update on the newest news and research information including Gene Micro Array Studies and a summary of the CDC Research: C3 Computational Challenge - 14 papers published in Pharmacogenics & Duke CAMDA Conference - Wichita data set. Please see our event web page for more information. http://www.rmcfa.org/event.html. If time allows and attendees are interested, I will talk more about my trip.
Kim McCleary spoke on the CFIDS Association of America's advocacy program and what the association is doing to strengthen the cause. The following topics were covered:
- CFIDS Association's advocacy history and the Sheridan group participation
- The advocacy programs with the CDC and NIH
- The CFIDS Associations participation in defining Social Security disability rulings
- The CFS Advisory Committee that was renewed September 5 by Secretary Levitt - Department of Health and Human Services
- Lobby Day events annually in Washington DC
- The $4 million Spark awareness campaign - Soft launch last June - hard launch scheduled for November 3
The CFIDS Association is the second largest contributor to CFIDS research behind the government. Kim also mentioned that the CFIDS Association's activities had an indirect affect on Fibromyalgia awareness because over 60% of CFIDS patients met the definition for both illnesses. For more information about the CFIDS Association advocacy efforts see "The Science & Research of CFIDS" http://www.cfids.org/archives/default.asp available for order online. We will also let you know how you can obtain a copy of the event (DVD) when it becomes available.
In addition to the speaking event, Dr. Bateman was kind enough to take time out of her busy day to show me around her clinic (Fatigue Consultation Clinic) and the OFFER office. We had the chance to discuss the national CFIDS and Fibromyalgia landscape, our organizations and how we can work together in the future to further our missions.
Aside from all the great information at the event, the trip was important from two points. It gave me the chance meet and listen to two people that have a major impact on CFIDS and Fibromyalgia internationally and gave me a great opportunity to get RMCFA recognized nationally. I also had the chance to see how a similar organization supports and educates their community. In coming months I hope to have the opportunity to discuss how we as an organization can directly benefit from national recognition and national networking.