Links
[Preemie Resources]
[Cerebral Palsy and Related Resources]
[Siblings Resources ]
[Other Resources]
Preemie Parent
Connection
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A newsletter for families raising prematurely born children. For a free sample
issue mail your request and first-class postage to: Preemie Parent Connection,
c/o PaperWorks, 2668 State Highway 812, DeKalb Junction, NY 13630. (Email
for more information.) This is personally recommended and endorsed by me
as it is the newsletter which I created and continue to Edit and Publish.
Tommy's Cybernursery
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One of , if not THE, very best preemie sites! Tons of links -- definately
the place to start your search for preemie information and support on the
Web!
Preemie
Resources
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The place to go to find preemie resources both on and off the Web. Includes
books, clothing, and everything else you might want.
Preemie-l Home Page
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Offers a wonderful Email-based support group of preemie parents and
professionals, Archives, Forum, Newsletter, and more.
Crochet
Preemie Afghans For Charity
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Preemie Mom initiates this project and shares patterns for preemie size afghans.
Includes pictures of afghans.
Parents of Prematures
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Preemie parent support group, many other programs. Newsletter available free
of charge to preemie parents anywhere in the United States. Address: PO Box
3046, Kirkland, WA 98083-3046.
IVH Parents
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Parents of, and professionals working with, babies and children who have
had an Intraventricular Hemorrhage share information, support, and on-going
research. Address: PO Box 56-1111, Miami, FL 33256-1111. Phone: (305) 232-0381.
Jeff's
Life
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This site is not readily identifiable as a preemie site, however, "The Alex
Essays" are about the author's premature son.
CP101 at The
Craig Family Home Page
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A great explanation of cerebral palsy and other related explanations. If
you are unsure about what cerebral palsy is -- go here!
CPPARENT Mailing
List Home Page
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Great mailing list for parents of children with cerebral palsy to discuss
topics of their concern. This is where I learned about Botox injections to
help Emily with the spasticity in her legs!
Cerebral
Palsy Charts
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Growth charts for children with cerebral palsy ages 0 - 10 years.
National Association for Sports for Cerebral Palsy
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66 E. 34 Street, New York, NY 10016. Phone (212) 481-6359
National Information Center
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National Information Center for children and youth with disabilities. Information
clearinghouse, referrals, fact sheets -- all free of charge. 1-800-695-0285
Shriners Hospital for Crippled Children
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Provides medical care, free of charge, to children up to 18 years of age.
Any child is eligible for admission if the child would benefit from treatment
at another facility and doing so would place financial burden on the family.
(19 hospitals nationwide.)
AT Advocacy Project/Neighborhood Legal
Services, Inc.
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Statewide clearinghouse for information, regulations and resources needed
to advocate for assistive technology, "Impact" newsletter, and more. Address:
295 Main Street, Room 295, Buffalo, NY 14203. Phone: (716) 847-0650. Fax:
(716) 847-0227 The "Impact" newsletter is VERY informative, in my opinion.
It has covered such topics as SSI payments and what can jeopardise these
payments and, therefore, medicaid coverage, Early Intervention, and so much
more!
Rifton Equipment
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Gait Trainers, Walkers, Standers, Chairs, Tables, Tricycles & more. Address:
PO Box 901, Route 213, Rifton, NY 12471. Phone: 1-800-777-4244. Fax:
1-800-336-5948.
Flaghouse Inc.
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Wide variety of equipment for gross motor, fine motor, cognitive, sensory,
positioning, sound & much and much more! Phone: 1-800-793-7900. Fax:
1-800-793-7922.
Crestwood Company
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Communication aids for children & adults. Address: 6625 N Sidney Place,
Milwaukee, WI 53209-3259. Phone: (414) 352-5678.
Ableware from Maddak Inc.
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Mobility, positioning, wheelchair accessories, tactile, exercise, recreation,
safety, communication, seating, bathroom & roilet, reading & writing,
hand aids, dressing, grooming, eating, kitchen & household, non-slip
surfaces, scissors, bed & much more. Address: Pequannock, NJ 0744-1993.
United Cerebral Palsy
Association
How Can I
Help?
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Information for friends and relatives of a child with cerebral palsy. GO
HERE -- THIS IS GREAT!!
United States Cerebral Palsy Athletic Association
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175 Lawrence Avenue, Brooklyn, NY 10006. Phone: (718) 436-7600
Disability-Specific
Web Sites: Cerebral Palsy
Kelly's Cool Place in
Cyberspace!
Who Will Help with Ramps
& Home Modifications
Low Cost - Low Tech Home
Modifications
Simple Home
Modifications for the Disabled
The Do-Able
Renewable Home
Accessible
Design/Universal Design Resources
Accessible
Homes
Sibling Information Network
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An organization for those interested in the welfare of siblings of handicapped
children. Quarterly newsletter with section especially for the siblings!
Address: Dept. of Educational Psychology, Box U-64, The University of
Connecticut, Storrs, CT 06268. Phone: (203) 486-4034.
Siblings for Significant Change
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Designed to unite siblings of handicapped individuals for the purpose of
advocacy, to disseminate information, to offer conferences and workshops
for and about siblings and families of handicapped peoples. Address: 823
United Nations Plaza, Room 808, New York, NY 10017.
The Sibling Support
Project
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For siblings of people with special health, developmental, and emotional
needs. Address: Children's Hospital and Medical Center, PO Box 5371, CL-09,
Seattle, WA 98105-0371. Phone: (206) 368-4911. Fax: (206) 368-4816.
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Special Education
Online Documents
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Government of British Columbia site with some excellent resources on special
education.
Oliver's Story
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Includes info on pre-eclampsia, premature birth, as well as their personal
tragic story. Links for pre-eclampsia, preemies, and grief support.
The HELLP Syndrome
Society, Inc.
Sidelines
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A non-profit organization with community-based chapter throughout the country.
Provides support, education, and advocacy to women with high-risk pregnancies
and their families. Publishes annual magazine. Address: PO Box 1808, Laguana
Beach, CA 92652. Phone: (714) 497-2265. Fax: (714) 497-5722.
Intensive Caring Unlimited
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Non-profit organization offering support to families of preemies, medically
high-risk infants, parents experiencing pregnancy loss or the death of an
infant. Offers Outreach Parents, quarterly newsletter, information pack,
lending library, referrals. Address: 910 Bent Lane, Philadelphia, PA 19118.
Phone: (215) 233-6994.
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