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Website and Forum Leadership
The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and
Orthostatic Intolerance website and forum were co-founded by Mary Robinson and
Rebecca Moore. They administer the
Pediatric Network with the assistance of a caring team of moderators. While we
are not a 501(c)3 nonprofit organization, all of us are volunteering our time to
help other families and professionals concerned with these pediatric conditions.
We'd like to introduce you to our forum team.
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Rebecca Moore, Meg Robinson, and Mary Robinson, August 2003 |
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Parent Moderators:
- Mary Robinson is the parent of two children who have had chronic
fatigue syndrome (CFS) and orthostatic intolerance, one of whom has recovered. She is an educator by training. She's
become an expert on the special education needs of kids with CFIDS, led a
support group for youth with CFIDS and their parents for several years, and
co-authored A Parents' Guide to CFIDS with David Bell, MD, Jean Pollard,
Tom Robinson, and Bonnie Floyd. She was a co-editor of Lyndonville News with
Dr. Bell and Jean Pollard and volunteered as a research assistant for Dr. Bell. She is also a volunteer Parent Representative on her school's Committee for Special Education (CSE). She has served as a volunteer advocate for parents who are in need of help understanding educational issues, through email and by phone. She lives in rural, upstate New York with her husband, son, and two daughters.
Mary co-moderates the Parents' Corner, School Issues: K-12,
Diagnosis &
Treatment, Coping Tips and Tricks and Community Discussion sections of the forum. Her forum user name is
MaryZ.
You can e-mail her at mary@pediatricnetwork.org.
- Norma Zuckerman is the mom to EJ, 14, who
has CFS, FM, and OI. Norma also has CFS, as
did her mom. Norma was a school psychologist and consulted with a program for
Physically Health Impaired students. She is now retired and spends her time with
her daughter, husband, cats and dog. She enjoys cooking and reading mysteries.
Norma is pleased to be co-moderator for the circle of friends in the Parents
Corner.
Her forum user name is NormaZ.
- Kathy Burns co-moderates the College and Adult Life section
of the forum. Her forum user name is kerrismom.
She shares this message:
I'm Kathy, 47, the mom of Kerri (a freshman at college and Matt ( a
high school senior) and happily married to Dan for 23 years. I work in
a hospital as an X-Ray Technologist and have been at the same hospital
for almost 30 years.
We have been dealing with Kerri's chronic illness for 7 years.
When not working or dealing with doctor appointments, medical
insurance and all those things that come with chronic illness, I like
to read, scrapbook and I also have a small home embroidery business.
The Pediatric Network has absolutely helped make our lives bearable and we are
able to share and gain so much information from the PN. It has become
an honor to be a part of their moderator team.
I feel I can help the forum community when it comes to questions
about supplemental security income, vocational rehabilitation agencies, and beginning college life with a teenager because I
have just gone through this.
Please feel free to write to me on the forum and if you would like
to talk off line, I will give you my home number or if preferable, my
e-mail address.
- Louise co-moderates the School Issues: K-12 section of the forum. She shares this message:
I'm Louise, the 50 year old single mom to Rachel (17 year old high school senior with CFS, POTS, and NMH).
Rachel has been ill since 8th grade. We live in the Cleveland, Ohio area. I work full time as am a nurse midwife specializing in gynecology.
I love to garden and read.
I know how important the information on the PN can be to families - it has changed our lives. I have lots of information regarding schools issues, long distance education options (both HS and college level), IEPs. I have fought a long battle with my daughter's school that was successful and received full reimbursement for my daughter's unpaid educational expenses. No lawyers involved - just a persistent mom.
My forum user name is cnm1. I would happy to help anyway I can.
- Shanon McQuown is the 38 year old mother
of sixteen-year-old Anthony. Shanon has Lupus while Anthony was diagnosed with CFS
almost three years ago. Shanon works as a paraprofessional in special education with Deaf children. She has
also worked with children with various degrees of other disabilities. She is grateful
for the training she received in the school system and believes it prepared her in
advance to deal with the havoc that CFS tries to impose on Anthony's education.
As life permits, she takes college classes. Because of the things she is learning
in her training and the lack of awareness and understanding she witnesses from
some professionals concerning her son's disability, Shanon has the goal of becoming
a lawyer specializing in disability law.
Shanon has been trained as a special education coach to help other parents navigate
the special education maze. She is presently in the 2002-2003 class of Partners in
Policymaking (an organization that trains people to be advocates for people with
all forms of disability). She also organizes workshops focusing on CFIDS and its impact
on education and coordinates the CFS/FM C.A.R.E. Group for people with CFS/FM
and those who "care".
Shanon co-moderates the School Issues: K-12 section with
Mary Robinson. Her forum user name is InIt4Him.
You can e-mail her at shmcqchildofgod@msn.com.
Shanon's favorite saying: I don't care if you've got your M.D., PhD, or your
MSEd, I've got my M.O.M. and I'm an expert in "Anthonyology".
- Sue co-moderates the Parents' Corner section of the forum. Her user name is
slduckworth.
Young Adult Moderators:
- Sandy is in her early 30s and has several medical conditions, including a rare
endocrine disorder, a bleeding disorder, and asthma (and a previous diagnosis of CFS at age 17). She was virtually
homebound for about six years as a young adult but has since been able to pursue her education, start her career, and
move into her first apartment. Sandy works in research and teaching mathematics at the university level. Her passions
include photography, music, writing, and website work. She also loves to spend time with children, including her new baby
cousins (who are her favorite photography subjects!).
Sandy was publisher and editor of The CFIDS Advocate newsletter, columnist and consulting editor for
Youth Allied by CFIDS, and has enjoyed other volunteer work for Habitat for Humanity and for her church.
Sandy co-moderates the Young Adult private forum
and her screen name is sandymath.
- Chrissy co-moderates the Young Adults section of the forum. Her user name is
adidascn.
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Rebecca Moore is 28 and
has had neurally mediated hypotension (NMH), postural tachycardia, food
allergies, and related conditions since she was 15. She also has Lyme Disease.
She completed her associates degree through distance learning at Empire State
College and is now taking nursing courses part-time. She lives in New York's Hudson Valley with
her parents and two golden retrievers.
Rebecca founded the Youth Program of The CFIDS Association
of America and served on its Board of Directors from 1995-1999. Her volunteer work for The
CFIDS Association of America has included co-editing its youth newsletter
and other publications,
coordinating youth and parent volunteers, assisting pediatric researchers with
study design, participating in the Association's research symposia
series,
reporting for The CFIDS Chronicle, and leading youth advocacy. She
served as Co-Vice Chair of the federal National Council on
Disability's Youth Advisory Committee in 2003, working to ensure that the
perspectives of young people are considered when disability laws or policies are
changed.
Rebecca is our webmaster, coordinates the teams of youth
and young adult moderators, and co-moderates forum sections such as
Diagnosis & Treatment, Pediatric Research,
and College and Adult
Life. Her forum user name is RMooreNY
and e-mail address is rebecca@pediatricnetwork.org.
Youth Moderators:
- Megan is 14 and has suffered with CFS and FM
since the age of 4. As soon as she was old enough to type she reached out to others with the illness. She lives in New York
State, in the USA, and has met kids from around the country. She also suffers
from Postural Orthostatic Tachycardia Syndrome (POTS) and unspecified
mitochondrial disorder. Megan's first love is animals. She has won first place
prizes at the county fair with her Golden Retriever, Sam, and also the llama she
trained, MacGregor. She is currently taking horseback riding lessons and hopes
to be able to continue this for a long time to come. She loves arts and crafts
and enjoys her latest love, knitting. She has offered friendship and support
to children on line who suffer from this illness, as well as sending small gifts
and trading cards to them by mail to help brighten their day. Megan is pictured
on the cover of the book A Parents' Guide to CFIDS along with her parents and
has a poem she wrote at age 7 in the foreword to the book.
Her forum user name is meggieliz42.
She co-moderates the Community
Discussion and Youth
Chat sections of the forum.
- Rachel co-moderates the Youth Chat section of the forum. Her user name is
roxeygirl2000.
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