The Year in Review….

As we near the end of the year, we’d like to take this opportunity to share our 2006 activities with you.   We’re proud of the progress we made this year and are sure you’ll find something new.

Special Highlights
For months, we have been working to update our website, www.nfra.net.  We’re delighted to say we are “live” with a whole new look, as well as several additions.  There is an improved shopping and donation area including the ability to take credit cards.  Visitors to the site can now communicate with each other through the NFRA Forum. We have partnered with Rosalie Devonshire and Julie Kelly, co-authors of the book, Taking Charge of Fibromyalgia.  The “Ask Rosalie and Julie” forum topic offers visitors a way to seek guidance on how to educate and empower themselves.  On a daily basis we continue to add and update information.  Please check us out….and plan to visit often to see how the site is growing.

This September in Salem, Oregon, we sponsored our Fifth Researcher’s Symposium, Fibromyalgia and the Central Nervous System.  During two days, 18 physicians and researchers made presentations on their current work.  Scientific research continues in such important areas as:

• Illustrating the differences in the brain’s reaction to painful stimulus in FM patients compared to healthy controls using imaging technology, including fMRI, PET and SPECT scans
• Biochemical abnormalities including neurotransmitter irregularities
• Hormonal deviations in fibromyalgia
• The connection between cervical spinal cord compression and small posterior fossa abnormalities in fibromyalgia patients. 

Research is helping to clarify subgroups in fibromyalgia and allowing physicians to better target treatments to each patient.

This year, the entire symposium was professionally videotaped. The DVDs of the presentations are available for purchase on our new shopping cart.  Visitors to the NFRA site can order just one DVD, or the entire set of 11 - allowing them to “attend” the entire meeting.  Visit www.nfra.net and click on Videos./DVDs in the Shopping Mall.

Physician Education
This year the NFRA staff attended six national medical conferences and provided thousands of medical attendees up-to-date FM information regarding diagnosis and treatment.  The conferences were:

• FAME 2006 (a patient/medical professional conference)
• American Academy of Neurology
• American Academy of Neurological Surgeons (attended, but did not exhibit)
• American Pain Society
• Congress of Neurological Surgeons
• American College of Rheumatology 

At these meetings not only did we share NFRA materials and copies of professional journal articles with the attendees, we learned about new theories and research in fibromyalgia and chronic pain management. 

NFRA Executive Director, Rae Gleason, has been invited to be the Fibromyalgia Department Head for the Practical Pain Management journal.  The first article, written by Dr. Kim Jones, will be published in January 2007.  Rae will schedule writers and compose preliminary comments for each article.  It is a wonderful way for NFRA to insure that medical professionals have quality information about the most current fibromyalgia treatment options.  If you are a medical professional and want to receive this free journal, visit www.ppmjournal.com to sign up.  If you are a patient, contact your physician’s office to insure they’ll receive this worthwhile publication.

Research
This year, NFRA provided some extra funds to extend an NIH funded research study at the University of Washington looking at the incidence of Chiari Malformation in fibromyalgia and chronic fatigue syndrome patients.  At our 2006 Symposium, Dr. Dedra Buchwald an internationally acclaimed FM/CFIDS researcher presented preliminary data on her team’s findings.  Thus far, they have shared with us that the rate of neurological irregularities is high in the FM patients compared to healthy controls in the study.  We’re looking forward to the continued analysis of the data.

Awareness
In addition to our website, we continued past awareness activities, and undertook several new ideas.  We provided support and materials to several professional racquetball players who proudly wear their fibromyalgia awareness bracelets at all their tournaments.  NFRA also provided sponsorship to the National High School Racquetball Tournament held in Salem, Oregon where FM information was shared with the participants and the audience.  We continued our sponsorship of the Miss Marion/Polk Scholarship Program (part of the Miss America system) and this year sponsored a local Mrs. Oregon United States winner to attend the national conference. 

A new activity for us this year was the development of public service announcements.  We worked with a local public relations firm to develop a radio spot that was sent to radio stations in our home state of Oregon.  One more way to get the message out about fibromyalgia.

Fund Raising
Nonprofit bingo proceeds still supply the majority of NFRA research funds. We persist in looking for new and creative ways to continue to finance our activities and goals. Support through donations and contributions to NFRA are appreciated. We hope our efforts to advocate for additional fibromyalgia research, raise public awareness and educate health care professionals will continue to be seen as worthy activities. We are thankful for the continued generosity of Jack Scott, NFRA’s founder, which allows our small staff of 2.5 FTE to persist in working hard to support this mission. We look forward to 2007 and the opportunities it will hold to work for all of you. 

Shanda Shribbs
Fernanda Scott
Jack Scott, Founder