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Northeast
Center for Special Care is pleased to feature:
The Healing Exchange Brain Trust
www.braintrust.org
The Healing Exchange
BRAIN TRUST is a unique website and
organization. It is one of the few support sites
dedicated to people living with brain tumors.
Both the website and organization offer significant
resources for visitors.
Based in Cambridge, Massachusetts, The Healing Exchange
BRAIN TRUST
was founded in 1997 by two brain tumor
survivors, a neurosurgeon and a nurse. (Samantha J.
Scolamiero, Arky Polokoff, Stephen Tatter, MD, and
Jayne Butler, PhD, RN) originally as a grassroots
volunteer organization. It is now a 501 (3) (c)
non-profit organization with a paid staff members and
volunteers working together. Their website has been
online since 1998.
BRAIN TRUST is actually an acronym which means:
Members of The Healing Exchange are Building Resource
And Information Networks Through
Respectful Understanding of the human Spirit
and Technology.
The Healing
Exchange BRAIN TRUST website is easy to
navigate. It contains information about the
organization's activities, and outreach. There is
a categorized page of links to sites with information
about specific kinds of brain tumors, the brain and
neuroanatomy; links to brain tumor centers, hospitals
and clinics; there is also information about
chemotherapy and its side effects, and other
topics. It is an effective portal to quickly
locate information related to brain tumors and
treatment.
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The
Healing Exchange BRAIN TRUST website is easy to
navigate. It is an excellent web resource for
information about brain tumors, treatment and support. |
The Healing
Exchange BRAIN TRUST
as an agency has four program areas that support their
mission of creating “a healing exchange.” As
advocates they are promoting social change by:
Creating,
maintaining and improving online communication
resources related to brain tumors and related
conditions. This includes providing online support groups,
informational web pages, recommended reading
lists and a newsletter.
Training people how to use the internet and
the online resources The Healing
Exchange BRAIN TRUST
provides.
The organization also trains health professionals about on line
resources to help them assist their patients.
They also provide
training to premedical students about clinical
brain tumor/brain injury issues.
Organizing face-to-face networking events to
augment the online communities that
The Healing
Exchange BRAIN TRUST
builds. These events are for socializing,
fun, support, spirituality, information and
advocacy. These special gatherings foster
lasting memories that help patient-survivors
and caregivers to realize that their lives, and not their brain
tumor(s), are what defines them.
Raising public awareness of the issues brain
tumor patient-survivors encounter.
The Healing
Exchange BRAIN TRUST
is a member of the North American Brain Tumor
Coalition.
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The Healing
Exchange BRAIN TRUST specializes
in online support
groups. Using the mailing list format, the
BRAINTMR list actually predates the website and
the development of the organization by several years.
It was one of the first
such mailing lists on the web to focus support for
health issues.
From their website:
In
May 1993, during her own quest for information
and support, Samantha Jane Scolamiero, a brain
tumor survivor, developed the first online
support group about brain tumors on the
Internet called “the BRAINTMR mailing
list.” This free, volunteer run service is
an international forum whose membership grew
exponentially until 1996 where it reached a
plateau of 1400. With the addition of many
other groups, the BRAINTMR list serves about a
thousand members daily. Members are brain
tumor patients, caregivers, health care
professionals, and/or researchers; some
subscriptions represent extended families,
entire face-to-face support groups and
renowned research clinics.
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The
BRAINTMR mailing list provides a healing exchange of
information and support via email for brain tumor
patients, caregivers, healthcare professionals and
researchers who send and receive the messages.
Currently there are approximately 1,000 participants from all
over the world in this group alone.
Besides BRAINTMR
there are thirteen other specialized
support e-mail lists which includes: Brain
Surgery, Adults
with Ependymoma, Caregivers
of Brain Tumor Patients, BT
Healthy Kids - Families Where One Member has a Brain
Tumor and There Are Healthy Active Children, Craniopharyngioma,
Dysembryoplastic
Neuro Epithelial Tumors, Parents
of Children with Ependymoma, Men
and Women with Meningioma, Information
and Support about Spinal Tumors, Teens
Of Parent Survivors, CNS
Lymphoma, Oligodendrogliomas,
and Teens
and Young Adults with Brain Tumors.
Since the days of Usenet mailing lists have been used
by people with medical conditions, a particular
diagnosis or disability to communicate, share
resources or simply to connect with others who know
what they are going through. The
Healing
Exchange BRAIN TRUST
does a great public service by
providing access to networks of people and
knowledge. Their online groups are not only a prime feature of
this site, but a great resource. The
BRAINTMR mailing list
and other groups provided by
The Healing
Exchange BRAIN TRUST
has been featured in the New
York Times and other media.
Another feature of The
Healing
Exchange BRAIN TRUST
are links
to community member personal pages. These very
personal websites are created by brain tumor survivors, and family
members. These sites are informative but more
importantly they tell individual stories. This is invaluable for people
who are experiencing similar situations. It's wonderful
that
The Healing
Exchange BRAIN TRUST provides access to these pages.
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The
Healing
Exchange BRAIN TRUST's "Audrey's Umbrella,"
program - people caring for people.
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For
the past year
The Healing
Exchange BRAIN TRUST has operated a support program
called Audrey's
Umbrella. This is a
program,
designed to bring joy to people living with a brain
tumor by sending encouraging mail, cheerful cards,
friendly letters, and small thoughtful gifts.
The work is performed by volunteers. Each month
the site has Audrey's
Umbrella featured
friends. It doesn't take long to see that brain tumors
affect people of all ages. Sadly several of the past
featured friends have passed away.
Another outreach conducted by
The Healing
Exchange BRAIN TRUST is their gray ribbon campaign to
raise awareness about brain tumors and acquired brain
injury (ABI). Visitors can request free gray
ribbons through the website.
The
Healing
Exchange BRAIN TRUST
website also has an amazon.com
bookstore and two Cafe Press stores to help support
The Healing
Exchange BRAIN TRUST and Audrey's
Umbrella. Visitors can also donate on their site through a secure server.
There is so much more about this organization you can
learn about through its website. It is
important to recognize that
The Healing
Exchange BRAIN TRUST has opened itself to embrace
individuals with all types of brain injury and they
are to be lauded for that. They have many types
of outreach and partnerships that you can learn about
by clicking onto their website.
This site is one of those great web resources that
stands out. The Healing
Exchange BRAIN TRUST
features
people helping people with hope and
support. This is an excellent first stop if you, someone
in your family or a friend has been diagnosed with a
brain tumor. Northeast Center for Special Care
is happy to present it to you as our April, 2006
website of the month. Click on their link and
don't forget to bookmark them so you can visit again.
Copyrighted
images courtesy: The Healing Exchange BRAIN TRUST
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Do you have a web resource you think we should consider for
our website of the month? Sites can be personal,
professional, informative, educational or
organizations. Our primary criteria is that a site be
unique in some way and offer it's readers useful
information and insight. Please click on Suggest-a-Site
and let us know about it.
Sites we select will receive a customized award
graphic
Please don't forget to check back with us next month when we
highlight another award-winning website.
Website of the Month Archive:
March 2006: Erienne
Romaine
February 2006: Vent
Weaning.com
January 2006: Brain
Injury News and Information Blog
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