May 2017 marks 10 years since the International Institute For Human Empowerment, Inc. hosted its first free Fibromyalgia Conference in Schenectady, NY. Since then, we have held two more free conferences, a four-day seminar which resulted in our Report, “Fibromyalgia: Awareness, Advocacy & Action”, and numerous smaller events to serve Fibromyalgia patients and caregivers. To date, approximately 5,500 copies of our Report have been given free to patients, physicians, therapists, and caregivers, while others have downloaded our Report online. In addition, members of the Institute annually spend a day at the New York State Senate and Assembly for the Resolution: Fibromyalgia Awareness Week in New York State.
This year, we are recognizing many who have volunteered time and expertise toward helping the Fibromyalgia Community cope while waiting for a cure. Agnes Welch founded the Fibromyalgia Support Group which is completing 36 years of helping hundreds of patients at St. Peterʼs Hospital in Albany, NY. Agnes is retiring now, but is strong in her encouragement for us to continue until a cure is found.
Jonathan Cooper, MD, was Medical Advisor for the Fibromyalgia Support Group, and continued until recently as Medical Advisor for Fibromyalgia activities of the Institute. He and Agnes pioneered much of the work in Fibromyalgia in the Capital Region and beyond long before much research was available to help physicians and patients.
Many physicians have volunteered by writing articles, participating in seminars and conferences. Of special note are Charles Argoff, MD; Frank Rice, PhD; Phil Albrecht, PhD; and Jonathan Cooper, MD. Daniel Clauw, MD of the University of Michigan is currently developing continuing education materials for Physicians in Fibromyalgia. Dr. Dorota Hausner-Sypek, Rheumatologist and Chair of Rheumatology for St. Peterʼs Hospital, sees many patients with Fibromyalgia and other accompanying illnesses, and serves as a resource to the Fibromyalgia Task Force of the Institute.
Betsy Shearer served as Fibromyalgia Support Group Leader with Agnes Welch for
over 30 years. She and Agnes still serve, along with patients, physicians, researchers,
legislative liaisons, and others, on the Fibromyalgia Task Force of the Institute. The Fibromyalgia Task Force is working to establish a Fibromyalgia Center in the Capital Region, promote educational materials in Fibromyalgia for Physicians, and secure legislative support for Fibromyalgia education and advocacy.
Julie Miner, Jaime Venditti, Minda Conroe, Ashley Ennis, Justin Hogan, and Alexis Fischer, representing J. Strategies, have provided support for all of the Institute Fibromyalgia initiatives. Board Members Erica Dodd and Joe Hazen provide direction for all Institute activities. Complementary Therapists have provided support through strategies for living well with Fibromyalgia. These Therapists include Elizabeth Heywood, PhD; Lorraine Calleri, OTR/LMT; Dorothy Frament, OPTR/LMT; Jeannette Perkins, Hypnotherapist, and many others. Educators who contributed to our Seminar Report include Ruth Kellogg, PhD, Diane Albano, EdD, William Schwartz, M.S., and Charles Weed, MA, deceased.
Patients have provided us with insight into the lives of those living with Fibromyalgia. Currently there is a new focus: Pediatric Fibromyalgia. This will bring increasing challenges to children, parents, schools and community organizations as well as medical professionals. More research is needed in all areas. Recent medical findings, by researchers Frank Rice, PhD, and Phil Albrecht, PhD, of Intidyn in the Capital Region, prove that Fibromyalgia is real. Those same findings may be expected to inform treatments for the future. Still, Fibromyalgia patients face discrimination from employers, schools, family and the medical community where Fibromyalgia is not yet respected for its potential for disability.
Ira Mendleson, Esq., Social Security Disability Attorney, has worked for many years with the Fibromyalgia Support Group, and is active on the Fibromyalgia Task Force of the Institute. He is knowledgeable about Fibromyalgia, and has spoken at several venues as well as provided an expert article for our Report. John Herrion, former Human Rights Attorney at the NYS Human Rights Commission, participated in our four-day seminar and wrote about the responsibilities of the employee and employer regarding Fibromyalgia. All of these professionals in their respective fields have donated time and expertise during the past ten years as volunteers. Their contributions to the Fibromyalgia Community are immeasurable.
The International Institute For Human Empowerment, Inc. has no dues. Itʼs membership is inclusive of all with similar philosophies who work to empower others. Fibromyalgia became a focus because of the discrimination many patients faced, and, sadly, continue to face. We work to help all to understand the burden–physicial, emotional, social, and financial–of Fibromyalgia.
A special thank you to Sen. Betty Little and Assemblywoman Aileen Guntherwho sponsor our Legislative Resolutions, and share their support in all of our Fibromyalgia efforts. You are to be honored for your vision and initiative.
Much still needs to be done to educate the general public, empower patients, increase research, and educate the medical profession. Please join us in this critical endeavor.
Sue Shipe, PhD, Founder and Executive Director,
International Institute For Human Empowerment, Inc. 518 393-9491