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. Robinson, August 2003
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 email@example.com.
- 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 firstname.lastname@example.org.
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.
- 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.
- 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 email@example.com.
- Andrea is 22 years old and has been learning to cope with FM, CFIDS, MPS, NMH, OI and Multiple Chemical Sensitivities since she was a teenager. Currently, she is happily married & lives on the East Coast. She loves reading, writing, chatting online and reality TV. Her passion is in the advocacy & education of Fibromyalgia, chronic pain and is looking forward to someday publish a book on these conditions. She co-moderates the College and Adult Life forum with the user name And77dc and may be reached through the forum.
- 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.