Copyright
© 1998 Head Injury Hotline
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TBI Support
Group Links
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From
The Ashes:
A Brain Injury Survivor's Guide
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More
than just a bump on the head! Though
not always visible and sometimes seemingly minor, head
injury is complex. It can cause physical, cognitive, social, and
vocational
changes. In many cases recovery becomes a lifelong process of adjustments
and accommodations for the injured person and the family. |
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D. Mortz Inspirational Award
est. 2002 |
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Resources & Support in Southern CA - meets 6:30-8:00 pm
-- last TUES of MONTH @ The Claremont Club; 1777 Monte-Vista Ave, Claremont
,CA Telephone: Dr. Karen Salter- Moss,
909-624-6005 -- OR Melinda Bowen, 909 931-9478 |
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Depending on the extent
and location of the injury, impairments caused by a head injury
can vary widely. The irony of mild head injuries is that often, such injuries
do not even require a hospital stay, yet they result in changes so profound
that lives are forever changed.
Some common
impairments include difficulties with memory, mood, and concentration.
Others include significant deficits in organizational and reasoning skills,
learning, cognitive, and executive functions.
Recovery from a head injury can be inconsistent.
In many cases gains may be closely followed by setbacks and plateaus. A
"plateau" is not evidence that functional improvement has ended. Frequently,
plateaus are followed by gains.
Changes
in memory,
social and organizational skills after a brain injury makes it difficult
to function in complex environments. Only individuals and families who
live with brain injury can truly understand the experience. You and your
family have lived the experience and by necessity learned
about brain injury and its consequences. Others will not fully understand
because they lack knowledge
and understanding of brain injury.
The needs of those living with
brain injuries are complex and change over time. As you seek services you
will meet others who do not fully understand brain injury. Educating
others about brain injury is an important role for you to play. While brain
injury has many common features, each individual and family bring their
own unique needs and perspective to the experience. No one will be able
to speak about your needs
and experiences as well as you can. The education of others
will be a continuing process as your needs change.
Education is part of the advocacy
process by which you can build awareness and acceptance. It can also
help match services and programs with your strengths and needs, develop
partnerships with professionals, and work toward changing the system.
Your life today is probably very different
than the one you had before brain injury. Looking back, you might
be surprised to see that you have grown
through this experience. As you look toward the future, know that
you are not alone. Organizations, agencies and services listed on the pages
of this site can help you. (Scroll down to links to support groups.)
Reach out to them and build
a network of support for yourself and your family. With the
support and help of others, you and your family will be able to set out
in a new, rewarding direction.
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Brain Injury Information
& Support
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Brain Injury Society - Brooklyn,
NY 11230
Telephone: 718-645-4401--Referrals, consumer and legal advocacy,
and support groups. NYS Medicaid Waiver Provider Services, educational
forums, and decision support.
url: http://www.bisociety.org |
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The Brain Injury Association
of Oregon - 2145 NE Overton, Portland, OR 97210 --
Telephone:
503-413-7707;
Toll Free: 800-544-5243
url: http://www.biaoregon.org -- email: biaor@biaoregon.org |
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Cafe Plus
-- 216 W. Manlius St., E. Syracuse, N.Y., Telephone: 315- 446-3124
- A social group for people who have survived head injury. Meets
every Sat. 12 to 4, p.m., est.Refreshments, Companionship and much more!
url:
http://www.dreamscape.com/cafeplus/
email: cafeplus@dreamscape.com |
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Head Injury Hotline
A non profit clearinghouse founded and operated by head injury survivors
since 1985. It is a place where visitors can get information, join
a discussion group, build advocacy skills, and self-care skills.
The site integrates resources from diverse organizations including support
groups, rehabilitation, and research sites, as well as lay and professional
journals and more. email: brain@headinjury.com
url: http://www.headinjury.com -- Telephone: 206-621-8558 |
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| Mouth Magazine - PO Box
558 Topeka, KS 66601-Bimonthly magazine. Subscription info.url:
http://www.mouthmag.org/ |
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Pensacola
Brain Network - (TBI / ABI) Support Group, Pensacola, Florida Survivors
and caregiver oriented - monthly meetings. url: http://pensacolabrainnetwork.com/sys-tmpl/door/
email: icepots@peoplepc.com |
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| TPN Inc., The Perspectives
Network - PO Box 1859, Cumming GA 30028-1859 - Voice/Fax:
770-844-6898 -- Provides forums and resources for persons with brain injury,
their families, caregivers, friends and the professionals who serve them.
Their goals are to promote a sense of community, and to increase public
awareness of brain injury. url: http://www.tbi.org -- email:
TPN@tbi.org |
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TBI Support Fund
- Founded in 1995 provides financial and emotional support to needy
TBI survivors. Giving limited to New Hampshire residents. email:
info@braininjurysupport.org -
url: http://www.braininjurysupport.org |
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| Traumatic Brain Injury -
Dedicated to survivors and all who wish to learn more about traumatic brain
injury. url: http://bjscloset.org/ |
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Trident Head Injury Support Group
-- 975-G Savvanah Hwy, Charleston, SC 29407 --
Telephone: 843 852-5550 ext.14
email: hasci@aol.com - url: http://www.thisg.com |
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Brain Injury Information
& Support continued
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Clubhouse Models
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HansonHouse TBI Clubhouse - Berea, OH
Telephone: 440-234-6723 --
email: joannboggs@aol.com |
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Hy Feinstein Clubhouse --
Long
Island Head Injury Assoc -- Provides info on TBI, referrals to facilities,
professionals and/or programs. Also provides support groups in Nassau and
Suffolk Counties of New York.
65 Austin Blvd., Commack, NY
Telephone: 516-543-2245 - url: http://www.lihia.org/ |
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Jodi House -- 1235 'C'
Veronica Springs Rd,
Santa Barbara, CA 83105 - Telephone: 563-2882
A clubhouse type day program serving TBI survivors and their families
since 1994.
url: http://www.jodihouse.org/
email: jhousenow@aol.com |
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Opportunity Project - Millburn, NJ. ABI Clubhouse offers vocational
assistance, socialization, computer training, and resources. Telephone:
973-275-5200
email: project@nac.net
url: |
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| Midwest Brain Injury
Clubhouse - Chicago Ill - Telephone: 847-225-5538
- Non-profit organization Clubhouse adults who have had a brain injury.
The Clubhouse is run by the members for the members. A small staff assists
members with the daily operations of the Clubhouse. url: http://www.braininjuryclubhouse.org/ |
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Foundations
& Model Systems
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| ABI Foundation -
P.O. Box 2216, Mission Viejo, CA 92690 Telephone: 949-830-7348
- Toll Free: (888) 412-7246 -- url: http://www.abifoundation.org/ |
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Alex Foundation
for Children with Brain Injuries - Telephone: 714-734-6064
url: http://www.abifoundation.org/alexcenter.htm |
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The Betty Clooney Foundation - Brain injury information, resource
and case management assistance- 4426 Village Rd, Long Beach, CA -
Telephone:
562-938-9005
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Brain Injury Association of California,
Inc. (BIACA) - PO Box 1410, Mill Valley, CA 94942-1410 - Support group
contact; http://www.brainstorming4us.com --
Toll Free: 888-662-4222 email: info@biaca.org --
url: http://www.biaca.org |
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California Brain Injury Association
2658 Mt. Vernon Ave., Bakersfield, CA 93306
Telephone: (661) 872-4903; Fax: (661) 873-2508
url: http://www.calbia.org --
email: calbiainfo@yahoo.com |
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Brain Injury Association Inc.
McLean, VA
National organization with chapters in many states.
Spanish Language services available
url: http://www.biausa.org |
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Brain Injury Association of Florida
(BIAF)
201 E Sample Rd. Pompano Beach FL 33064
Telephone: 954-786-2400 - Fax: 954-786-2437
url: http://www.biaf.org/ -- email: info@biaf.org |
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Brain Injury Association of Texas
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url: http://www.biatx.org |
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Brain Injury Association of Illinois
P.O. Box 64420, Chicago, IL 60664-0420
Phone (312) 726-5699 Fax (312) 630-4011
url: http://www.biail.org --email: <info@biail.org> |
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International Brain
Injury Assoc - 700 Harris St
Ste 205, Charlottesville, VA 22903 - provides
scientific and medical leadership worldwide in the field of brain injury.
Telephone:
804-296-4242
url: http://www.internationalbrain.org
email: info@internationalbrain.org |
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Hemi-Kids Foundation -
Provides information and support for families of children with hemiplegia,
hemiparesis, or pediatric stroke.
url: http://www.hemikids.org |
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Long Island Head Injury Assoc,
65 Austin Blvd, Commack, New York, 11725,
Telephone: 631-543-2263, Fax: 631-543-2261 url:
url: http://LIHIA.org |
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Missouri
Model Brain Injury System -- focuses on using natural supports,
such as family, friends, neighbors, schools, churches, employers and co-workers
to support TBI survivors and their families.
url: http://www.hsc.missouri.edu/~mombis/projects.htm |
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New Options TBI Project - Central
CA -1395 - 41st AVE #B, Capitola, CA 95010
Telephone: 831-462-8720; Fax: 831-462-8727 |
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Pittsburgh Area Brain Injury Alliance.
url: http://www.pabia.org |
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San Diego Brain Injury Foundation
(SDBIF) Providing information, support, education, and community awareness
for brain injury survivors and their families in San Diego, California
since 1983. English and Spanish - Telephone: 619-294-6541-
email: sushans6@aol.com
url: http://www.Sdbif.org/ |
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San Francisco TBI Network - St Mary's Med. Ctr.
207 Skyline Blvd, SF, CA 9432
Telephone: 415-665-4100 - Fax: 415-665-4107 |
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| St. Judes Brain Injury Network
- Serving Orange County - Adult Assistance and Case Management for Adults
with Traumatic Brain Injury only Telephone: 714-449-4977 - url:
http://www.tbioc.org |
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| TBI & SCI Projects
- Located at Santa Clara Valley Medical Center - catalogue
of California TBI & SCI resources -- url: http://www.
tbi-sci.org -- email: tbird@tbi-sci.org |
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Whiplash Injury Support Group
-- Products and information concerning whiplash injury protection.Wedge
Support Products - Telephone: 888-800-7117
url: http://www.addonheadrest.com
email: addonheadrest@worldnet.att.net |
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Canadian
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Brain Injury Association of Canada / Association canadienne des
lésés cérébraux
28 Caron, Gatineau (Québec) J8Y 1Y7
Tel. :Toll free line/sans frais: 1-866-977-2492
Tel: Local calls/Appels locaux: (819) 777-2492
Fax/Télécopieur.: (819) 595-2458
E-mail/Courriel: biac-aclc@hotmail.com |
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Brain Injury Association of Alberta
- Canada
url: http://www.biaa.ab.ca/ |
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| BIAN -- Brain Injury Association
of Nipissing - Canada -- url: http://travel.to/brain |
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Brain Injury Association
of London and Region -
url: http://www.braininjurylondon.on.ca |
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Brain Injury Association of Chatham-Kent
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463 St. Clair Street, Ste 3B, Chatham, Ontario
N7L 3K6 Canada
Telephone: 519-351-0297; Fax: 519-351-7600
email: biack@ciaccess.com ; url: http://www.biack.com |
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Brain Injury Association of Sarnia-Lambton -- 387 Exmouth St,
Sarnia, On, N7T 5N8
Telephone: 519-337-5657 Fax: 519-337-4317
email: headinj@ebtech.net |
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Manitoba Brain Injury Assocation
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url: http://www.escape.ca/~mhia/ |
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Newfoundland Brain Injury Society,
Ste 1213, Southcott Hall,100 Forest Road, St. John's, NF, A1N 1E5
Telephone: 709-579-3070; Fax: 709-579-3109 - email:
nbia@avint.net - url: http://www.nbia.nf.ca |
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Brain Injury Association
of Nova Scotia --
P.O. Box 8804, Halifax, Nova Scotia, B3K 5M4
Telephone: 902-473-7301; Fax: 902-473-7302
url: http://www3.ns.sympatico.ca/bians1/ |
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Ontario Brain Injury Association
- Canada
PO Box 2338, St. Catherines, On, L2M 7M7
Telephone: 905-641-8877; Fax: 905-641-0323
url: http://www.obia.on.ca/ |
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Saskatchewan Head Injury Assoc - Canada
2310 Louise Ave, Saskatoon, SK, S7J 2C7
Telephone: 506-373-1555 Fax: 306-373-5655
http://www.saskbia.org |
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Vancouver Island Head Injury Society-
201-651 Queens Ave, Victoria BC V8T 1L9 -- Canada
Telephone:
250-598-9339
Fax: 250 598-9363 -
url: http://www.biasvi.org/
email: admin@biasvi.org |
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Yukon - Acquired Brain Injury Society
of the Yukon
Telephone: 867-456-2722
url: http://www.ycod.yk.ca/ |
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International
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Children's Head Injury Trust
c/o Neurosurgery
The Radcliffe Infirmary, Woodstock Rd
Oxford OX2 6HE UK
url: http://www.cbituk.org
Tel/Fax: 01-865-224-786
Email: execdir@chit.demon.co.uk |
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Brain InjuryAssociation Israel, B.I.A.I,
email: mugrabin@zahav.net.il |
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Head Injuries Trust for Scotland (HITS)
Tel: +44 (0)1-324-471-311 |
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Headway Victoria. Australia
-- 2nd Fl, 212 King Street, Melbourne, 3000. Australia. A
community based non-profit group.
Telephone: (03 )9642 2411 Fax: (03) 9642 2522 FreeCall:
1800 817 964
url: http://www.headwayvictoria.org.au/ |
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Headway
Ireland -- 101 Parnell St, Dublin 1
Tel: 00 353 1 8729222 If Inland Tel: 01 8729 222
url::http:/ www.headwayireland.ie
email: services@headwayireland.ie |
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| Headway - United Kingdom
-- A charitable family support group for survivors of acquired brain
- url:
http://www.headway.org.uk |
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Head Injury Society of
New Zealand
url: http://www.head-injury.org.nz/ |
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Herefordshire
Headway - Headway House, Trenchard Ave, Credenhill, Herefordshire
HR4 7DX
Dedicated to the care and rehabilitation of victims of severe brain
injury in Herefordshire, UK.
Telephone: 01432-761000
url: http://www.herefordshire-headway.co.uk/ |
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International Brain
Injury Assoc - 700 Harris St
Ste 205, Charlottesville, VA 22903 - provides
scientific and medical leadership worldwide in the field of brain injury.
Telephone:
804-
296-4242
url: http://www.internationalbrain.org
email: info@internationalbrain.org |
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Waikato Head Injury Society
- New Zealand
url: http://whis.nzl.org |
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| The Way Ahead - Membership
organization utilizes drama and the arts to provide support education and
life skills training. url: http://www.way-ahead.org.uk |
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Union Nationale des Association
de Familles de Traumatises Craniens -- France
url: http://traumacranien.org |
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MedWeb
-- Neurological Patient Support Groups
Dept of Neurology, Queen Elizabeth Hospital
Birmingham B15 2TH United Kingdom
Tel/Fax: +44 121 627 2061 |
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Caregiver
Resources
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| The family and
friends of the victim feel the psychic repercussionsof the head
injury acutely as well. Caring for an injured family member can be
very demanding and result in economic loss and emotional burdens.
It can change the very nature of family life; the resultant emotional difficulties
can affect the cohesiveness of the family unit. Typically, the emotional
damage is intense, affecting family and friends for years afterward and
sometimes leading to the breakup of previously stable family units. |
| Care-giver.com --
Resourses and information for caregivers. url: http://www.care-giver.com/ |
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| Empowering Caregivers--
Resourses and information for caregivers. url: http://www.care-givers.com |
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| Family Caregiver Alliance
- offers online information and support to families of persons with
traumatic brain injury. url: http://www.caregiver.org - |
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National Family Caregivers Association
NFCA -- 10400 Connecticut Avenue, Ste 500, Kensington, MD 20895-3944 --Dedicated
to making life better for America's family caregivers. Telephone:
301-942-6430;
Toll Free: 800-896-3650; Fax:
301-942-2302 -
url: http://www.nfcacares.org -
email: jeannie@nfcacares.org |
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National Fathers Network
-- An excellent site pertaining to kids, teenagers and adults.
url: http://www.fathersnetwork.org/ |
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Orange Caregiver Resource Center -- Telephone: 714-578-8670
Toll
Free: 800-543-8312
url: ttp://www.caregiveroc.org |
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TBIhelp.org -- Help for
TBI Caregivers --Presented By Jamaica Hospital Medical Center --
Sponsored By United Hospital Fund. Featuring:
Live
professionally moderated chat: Mondays - 7 to 8pm (EST) -
url: http://www.TBIhelp.org/ |
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TBI Support Group for Families & Survivors
Gaylord Hospital Conference Rm
Wallingford, CT
Telephone: 203-284-2800, ext 3404 |
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Today's caregiver Magazine
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url: http://www.caregiver.com/ |
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| Well Spouse Foundation
- offers information and support. url: http://www.wellspouse.org
-- email: wellspouse@aol.com |
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Survivor
& Family Sites:
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Becca's Workshop -- 208
Broadway, P.O. Box 325, Berlin, Wisconsin 54923-0325 --
Toll Free: 877-750-8697 -- url: http://berlinbear.com/
email: rm@berlinwi.com |
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Brain Injury
Resource for Victoria, B.C., Canada
Advocacy, support resources. Assistance with landlords, income and
disability benefits.
url: http://members.shaw.ca/social.work/index.html |
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| Dean Grange -- tragic
accident of August the 9th 2002, |
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Family Friendly Fun
& Special Needs -- Resources offers access to mind, body and
spirit- enriching information that enhances the quality and enjoyment of
family life with special needs.
url: http://www.family-friendly-fun.com |
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Heather Bublick Rehabilitation
Foundation
Promoting advocacy and educationurl: http://www.fFighting4heather.org |
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Jessica Taylor(Author/Activist)
- Kerry, Ireland Telephone: 353(o)66 976 2241
url: http://www.jessicataylor.info
email: jessicataylor9@yahoo.co.uk |
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John D. Biagio --
Motivational Speaker
url: http://www.johndibiagio.com/ |
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| Marianne Hartman Robards
- Personal account of a head injury survivor. url: http://www.learn.at/headinjury |
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| No Tears In Heaven
-- Est. in 2000 following their 12 year old son's anoxic brain injury due
to cardiac arrest url: http://www.notearsinheaven.com/ |
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Survivors
Living Alone Proudly (S.L.A.P.) - Brain stem hemorrhage survivor
living alone seeks online chat with other brain injury survivors living
alone.
url: http://injury_survivors.homestead.com/home.html
email: terrijo_222@yahoo.com |
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| Survivors of Head Injuries
-- Founded by Aneta Lyons following the 1985 auto accident of her son Duane. |
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| Henry
and Ruby Moss - Visit this web site and follow the progress of
a victim of "Locked-In Syndrome," a rare and often fatal form of stroke.
Please
send donations to: "Henry Moss Rehab Trust Fund" First
Community Credit Union, PO Box 28284, St. Louis, MO 63132 (account # 920025790) |
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Chat
& Listserves
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http://www.egroups.com/group/TBI-Survivor--
a email list of people with brain injures for others with tbi.
url: http://www.egroups.com/group/TBI-Survivor |
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Lightning
Strike Survivor List (LSSL) is an on-line email support group -- An
on-line email support group
url: http://www.egroups.com/group/lightningstrike
email: lightningstrike-owner@egroups.com |
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St. John's TBI-SPRT Listserv
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url: http://www.sasquatch.com/tbi/ |
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| Brain Injury Chat
-- Peer support chat site for survivors & family Caregivers url:
http://www.braininjurychat.org |
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| TBI Home -- A Peer Support
website featuring discussion boards and a place to share brain injury stories,
srt, and more. url: http://www.tbihome.org |
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| http://neuro-www.mgh.harvard.edu/forum/
-- forums maintained by the Department of Neurology at Massachusetts
General Hospital |
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SCI Mailing List:
An Internet mailing list on spinal cord injury, called SCIPIN-L List. To
join it, send a
message to listserv@health.state.ny.us with only the words "subscribe
SCIPIN-L" in the body of the message. After you join, send
all messages to the list to scipin-l@health.state.ny.us, NOT to
the address below. listserv@health.state.ny.us |
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The Way Ahead - Membership
organization provides chatroom and messageboard.
url: http://www.way-ahead.org.uk |
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Vent
Users Mailing List: This Internet mailing list is a
forum where ventilator users can communicate with one another. To join,
fill out the online form at the website of list owner Jim Lubin.
url: http://www.eskimo.com/~jlubin/disabled/ventuser.htm |
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Quadriplegic
(Tetraplegic) Discussion Group: This Internet mailing
list, called QUAD-LIST, is a forum for quadriplegics (tetraplegics) to
communicate with one another. To subscribe to the list, follow the instructions
found on Jim Lubin's QUAD-LIST web page.
url: http://www.eskimo.com/~jlubin/disabled/quadlist.htm |
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Epilepsy
Support Group -- Self-help resources including support
url: http://clubs.yahoo.com/clubs/epilepsysupportgroup |
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| Archives of TBI-PROF Mailing
List - This list is strictly for professionals who work
in the field of Brain Injuries. Browse or search the archives for information
on TBI/ABI, research, treatment modalities, etc. A mailing list subscription
link is included to make it easy to join. url: http://maelstrom.stjohns.edu/ |
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206-621-8558
