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Big Changes at the Pediatric
Network
August 2008
Dear Friends,
The Pediatric Network has opened an e-mail group for forum members so we can
more easily keep in touch. We are closing our web-based forum and will
focus on providing support through the smaller Yahoo e-mail group.
How can you sign up for the e-mail
group?
If you’ve previously been involved in the Pediatric Network, please stay in
touch by joining our new Yahoo e-mail group! Go to
http://health.groups.yahoo.com/group/pediatricnetwork
and click on “Join this group.” Or, you may subscribe by sending an e-mail to
pediatricnetwork-subscribe@yahoogroups.com.
Using the Yahoo Group website you’ll be able to:
- Subscribe or unsubscribe to the Yahoo group (including the e-mail
list)
- Change the e-mail address that receives messages
- Opt to only read messages on the web (not receive e-mails)
- Share photos, other files, and links with other members
- Read the e-mail group’s archives
Why have we made this change?
We recognize that closing the web-based forum will
be a big change for some members. To put it simply, our lives have changed
dramatically in recent years, and we are unable to devote the time needed to
maintaining a large website and forum. When Mary and Rebecca founded The
Pediatric Network our families were coping with CFS and OI. In the years since
then, Mary’s daughter has been diagnosed with late-stage Lyme, additional tick
borne infections, and an immune deficiency. She has graduated high school and
begins college this fall. Mary’s daily life will change as she supports her in
this transition. Rebecca has also been diagnosed with late-stage Lyme, an
immune deficiency, and significant neurologic problems, graduated from nursing
school, got married, and is expecting a baby. As always, our lives are full of things
both wonderful and challenging, and we need to create space for them.
We want to keep in touch with our dear friends in the forum, and to cheer each
other on as we explore new things. The best way we see to do this is to use the
Yahoo e-mail group to keep each other posted on our lives, ask questions, share
resources, and more. We envision reading the Yahoo group more frequently than
the forum, because messages will reach members’ in-boxes and be viewed more
quickly.
Who is the e-mail group for?
Are you new to the Pediatric Network? At this point the Pediatric Network
members are primarily families who have coped with chronic illnesses for a long
time. Our focus is no longer on the newly diagnosed, but is more on living the
best life possible despite the many ups and downs that come with chronic
conditions. We discuss college planning, insurance and SSI, parenting, and
coping more often than specific medical questions. Our members’ (or their
children’s) diagnoses often started as chronic fatigue syndrome, fibromyalgia,
and/or orthostatic intolerance, but in some cases have changed to include
tick-borne infections, immune deficiencies, and neurosurgical issues. If your
(or your child’s) diagnosis is definitely established as CFS, FM, OI, or chronic
Lyme we welcome you to join.
Please sign up!
If you were a member of the forum, we especially encourage you to sign up for
the Yahoo Group and to stay in touch. Remember, once you’re subscribed, you can
manage your own subscription and can take advantage of other tools on the
group’s website:
http://health.groups.yahoo.com/group/pediatricnetwork/
We hope to hear from you soon at the Yahoo Group!
Sincerely,
Rebecca and Mary
Co-Founders, The Pediatric Network
Explore Our Site:
Please note that this website is primarily an archive -- it is not updated
frequently. Take responsibility for checking all information with your healthcare providers.
- Medical Articles: Diagnosis and
treatment of CFS, FM, OI, NMH, POTS, syncope, and related conditions
- School Success: Resources for teens,
parents, teachers, tutors, school nurses, and other professionals
- Transition Planning for Adolescents:
Include preparation for independence in your IEP
- Independence & Young Adulthood:
Independent living, college, finance, internship and career resources
- Parenting Articles
- Youth Voices: Advice
from those who understand
- Question and Answer Forum
- Advocacy: Training for teens and parents
in self-advocacy and political advocacy
- Lyndonville News: Archive of some of
our favorite articles
- Links: Support groups, medical
websites, nonprofit organizations, newsletter archives, camps and more
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