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Nominated by Patricia LaRosa, RN, MSN
New Jersey Chronic Fatigue Syndrome Association
Length of Service:
Hours per Month:
March 15, 2012
Being a part of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA) has opened many new opportunities for sharing. Some of my activities include:
1st VP 2006 - 2010
2nd VP 2005 - 2006
Editor of NJCFSA Journal - 2006-present
NJCFSA Journal writer - 2005-present
NJCFSA website - redesign team coordinator, 2010
Webmaster - 2010-present
Initiated & maintain NJCFSA Facebook page 2010-present
Helpline Volunteer 2007 - present
NJCFSA Annual Physician/Patient Conference committee
Youth Education Committee
High School Scholarship Committee
Co-Produced Informational Disk - Education and the Child or Adolescent with ME/CFS - For
Parents, Schools, Physicians
Co-Produced Healthcare Provider Information disk
Exhibit for NJCFSA at conferences for Pediatricians, School Nurses & School Psychologists
County level - support group co-leader 2006-present
County level - monthly online newsletter Oct 2003 - Nov. 2011
Living with a serious chronic illness can be difficult. When that disease is misunderstood by part of the medical community, as well as the public, it can be even harder. I was fortunate that my primary healthcare provider did not dismiss my illness as "not real." The journey to re-adjusting one's life is easier with support of physicians, family and friends. I originally became involved in order to learn more about my illness.
My first involvement was on the local level, as a member of the county support group affiliate of the NJCFSA. At the leader's request, I instituted a monthly newsletter for the members. It was originally sent via USPS to a limited number of patients who could not attend the meetings. However, when a local website was established, our following grew to a monthly readership of over 200 per month via email (with another 15-20 via conventional mail to those who did not have email service.)
In 2005, I was invited to attend an NJCFSA meeting, and so began my involvement on the state level. I have learned that so many people "suffer" with this disease. They cannot find ME/CFS-friendly doctors. Family members sometimes think the disease is not real. Schools deny ill children the needed educational accommodations and some adults are denied disability benefits. A society that does not understand a disease, sometimes denies it is real. "Living" with ME/CFS is what I hope for those I serve while we await a diagnostic test, treatment and ultimately, a cure.
At times, the challenge of this work takes its toll on me - and my fellow board members - but there is great reward in the thanks of those we try to help. Sometimes, I hope there will be no calls when it is my day to respond to Helpline calls. However, when you are able to provide the caller with information, or even an understanding ear to listen, you come away from the call with a sense of gratitude that you could make a difference. THAT is why I do it. To learn that a child has received needed school accommodations because of support you could give the parent, THAT is why I do it. It is their sense of relief that makes me feel fulfilled.
NJCFSA is an all-volunteer organization, nationally and internationally recognized, that relies on donations to meet its goals. I hope my work stands as an example of the work also performed by other board members. Should you choose to honor me, you also honor my colleagues.
Thank you for your consideration.
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