by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
I am saddened to learn of the demise of what I have always considered to be one of the most successful America fibromyalgia support group thanks to one woman’s efforts. However I am pleased that this powerhouse of a lady has come up smiling with a real positive outlook. Welcome back Sabrina Dudley Johnson – or Bri as she signs herself.
Sabrina Dudley Johnson, BS, CJ, CLEO, is a former police officer disabled by injury-related fibromyalgia, founded the Fibromyalgia Association Created for Education and Self-help [FACES, Inc.] in response to her experiences as an African American public safety worker with this chronic pain disorder. An all volunteer, 501 [c] , nonprofit organization located in Chicago, Illinois, FACES fought to build awareness of fibromyalgia through community partnerships, http://www.fibrocop.org/, a semi-annual video magazine, and speaking engagements. Sabrina is also a member of NFA’s Leaders Against Pain Coalition.
This week news reached my desk top that The Board of Directors announced the dissolution of The Fibromyalgia Association Created for Education and Self-help [FACES], and Illinois 501 [c] . visit http://www.fibrocop.org for more information until January 14, 2007.
The Fibromyalgia Association Created for Education and Self-help [FACES] was the only fibromyalgia organization founded and operated by minorities with FM. FACES was dedicated to improving the quality of life of people with FM through patient education and public awareness programs. The group provided workshops, seminars, conferences, monthly meet up groups, an e-newsletter and annual television show. While serving all people with FM, FACES was the only organization concerned about the specific issues facing minorities and public safety workers with the invisible disability.
The Goodbye From FACES announcement said, “It is with a heavy heart that we announce the closing of The Fibromyalgia Association Created for Education and Self-help [FACES]. For continued information and support on Fibromyalgia, please visit Sabrina’s blog at http://www.fibrocop.blogspot.com
Describing the reasons for Voluntary Dissolution of the Fibromyalgia Association Created for Education and Self-help [FACES, Inc], the website states the corporation is highly associated with its founder and after the deterioration of the founder’s health the organization now finds itself unable to function; attract dedicated and active board members, reliable volunteers, or generate ongoing funding.
Comment is made that other corporations exist that perform substantially the same function and it appears that the market does not need and/or can’t support multiple institutions. The mission of FACES has been to improve the quality of life of people with fibromyalgia through patient education and public awareness. Unfortunately, without the service of dedicated and active members of the board of directors, reliable, active volunteers, and ongoing financial support of individuals and institutions that believe in this mission, it is impossible for our organization to continue. As we say goodbye, we thank our Founder/President for our accomplishments over the last 13 years. Without her The Fibromyalgia Association Created for Education and Self-help [FACES] would never have existed. The website gives a long list (19) of achievements including an Awareness Month in Chicago during May, community partnership programmes with government and health agencies, contributed to text books, and co-authored an entry in the Encyclopedia of Disability, sponsored the nation’s first Live Fibromyalgia Awareness Television Show, as well as workshops, seminars, conferences.
In a festive message dated January 2 wishing us Happy Holidays, Sabrina, otherwise known as fibrocop from Chicago – wrote and said, “As many of you now know, the board of directors of The Fibromyalgia Association Created for Education and Self-help has voted to dissolve FACES. I am going to spend more time concentrating on my health. I have started three blogs.
· http://www.fibrocop.blogspot.com to keep my foot in the Fibromyalgia Awareness Pool
· http://www.beautyshouldnothurt.blogspot.com where I hopefully will get ideas about natural personal care products since I have developed sensitivities/allergies to almost everything
· http://www.thatscaketome.blogspot.com where I can discuss my first love – cake baking and decorating.
Feel free to visit them, sign up, post messages and visit any sponsors. Sabrina.”
On her new blogspot Sabrina, signing herself as Bri, lists websites of interest who had been community partners of the Fibromyalgia Association Created for Education and Self-help (FACES).
She adds, “Even though FACES is no longer in operation, I felt it important to provide links to these organizations that provide awareness of Fibromyalgia and other issues.”
Apart from well-known fibromyalgia websites Sabrina included the Chicago Mayor’s Office for People Disabled – http://www.cityofchicago.org/disabilities.
Under the heading “fibrocop” on her new blogspot – thoughts, news, FACES of Fibromyalgia (and maybe other chronic illnesses) she writes about Determination, which summed up for me, a mere fibromite, quite a lot about fibromyalgia
People with Fibromyalgia exhibit a dogged determination every single day.
· Every morning a person with Fibromyalgia makes the resolve to get up in the morning despite the pain and stiffness she feels.
· Every day a person with Fibromyalgia makes the resolve to go out into the world [either to go to school, work, the doctor’s office, or shopping] despite fatigue.
· The Fibromyalgia advocate makes a resolve to help others, build awareness of Fibromyalgia and support patient education despite reduced stamina, cognitive impairments and reduced or eliminated income.
Often times all the person with Fibromyalgia has control over is her determination.
“Don’t let anyone steal your dream. If you believe in yourself and prepare yourself, you can achieve your dreams”. Oscar winner, Chicago native Jennifer Hudson addressing her Alma mater. [Note: No Ms. Hudson does not have FM. I just liked the quote]
For the person with Fibromyalgia, dreams and goals must be realistic.
The person with Fibromyalgia may not be able to become an American Idol or win an Oscar but he can be a champion of his health care. Through adequate Fibromyalgia related education and ongoing public awareness, the person with Fibromyalgia can learn about advances in research and up dates in treatment options.
Prepare yourself by reading as many ‘good’ books on Fibromyalgia that you can get your hands on, surf the internet and visit ‘reputable’ websites, attend uplifting support groups and participate in educational events whenever possible.
Speak up and tell your Fibro Story to anyone who will listen – you’ll soon realize that more and more people are believers and understanding.”
Using the blog as her way of keeping active in the Fibromyalgia Advocacy Community Sabrina writes, “I am a former government worker. I developed Fibromyalgia after a series of injuries on the job. I am a survivor of disability related domestic violence. While going through a knock down, drag out wrestle mania divorce and disability pension fight I founded a not-for-profit organization called the Fibromyalgia Association Created for Education and Self-help [FACES] to help provide patient education and build public awareness of Fibromyalgia. I suffered a stroke in November 2006 and the board of directors chose not to keep the organization up and running once I resigned.
Born under the Aquarius sign and having working in accounting, now retired, Sabrina lists her interests as research, writing, fibromyalgia advocacy, cake baking and decorating, natural cosmetics, personal care products and green living. She loves Jazz blues and anything by Luther VanDross, loves the Die Hard films and the first Men in Black film.
Sabrina, as one advocate to another – from Across the Pond – may I wish you lots of luck with your advocacy and if we can work together on any project together, just whistle in the wind and tell me what you have in mind. We might move mountains together.
If you want to keep up to date with what Sabrina is doing on your Side of the Pond log on to http://www.fibrocop.blogspot.com. Talk soon Jeanne.