RESOURCES FOR SPECIFIC CONDITIONS
This section contains organizations and resources grouped by condition (i.e., cleft palate, crouzon syndrome, moebius syndrome, cancer, etc.).
ACOUSTIC NEUROMA
Acoustic Neuroma Association
Over 56 support groups and a quarterly newsletter. Their September 2002 newsletter had a very interesting article titled, Modern Management of Rehabilitation of the Eye in Facial Paralysis.
Lois White, Executive Director
600 Peachtree Pkwy., Ste. 108
Cumming, GA 30041-6899
(770) 205-8211 - Phone
(770) 205-0239 - Fax
E-mail: anausa@aol.com
Web: http://www.anausa.org
ANA/NJ - Acoustic Neuroma Association of New Jersey
Web: http://www.ananj.org
ALBINISM AND HYPOPIGMENTATION
National Organization for Albinism and Hypopigmentation (NOAH)
Chapters, newsletter, information packets, and conferences.
P.O. Box 959, East Hampstead, NH 03826-0959
(800) 473-2310
E-mail: webmaster@albinism.org
Web: http://www.albinism.org
ALOPECIA AREATA
National Alopecia Areata Foundation
Bimonthly newsletter and 50 support groups in North America.
P.O. Box 150760, San Rafael, CA 94915-0760
(415) 472-3780
E-mail: info@naaf.org
Web: http://www.naaf.org
APERT SYNDROME
Apert Web Page
A delightful full-service web page maintained by Don and Cathy Sears.
Don & Cathie Sears
P.O. Box 2571, Columbia, SC 29202
(803) 732-2372
E-mail: catndon@apert.org
Web: http://www.apert.org
Also see Babyface, A Story of Heart and Bones.
BASAL CELL CARCINOMA NEVOID SYNDROME (BCCNS a.k.a. Gorlin Syndrome)
BCCNS Life Support Network
This U.S. network is dedicated to promote education, support, and early detection for this very complex syndrome. Their brochure lists over 21 serious medical conditions that challenge the diagnosis and treatment of BCCNS. Medical referrals, a newsletter, family and medical retreats, hospital staff education and team collaboration are all part of their work. We recommend their film Bitter Inheritance (1/2 hour) for anyone who wants to learn more about the syndrome.
Kristi Schmitt-Burr, Director
P.O. Box 321, Burton, OH 44021
(440) 635-0078
(866) 834-1895 - Toll Free Patient Line
E-mail: info@bccns.org
Web: http://www.bccns.org
BELL'S PALSY
NINDS Bell's Palsy Information Page
Located on the National Institute of Neurological Disorders and Stroke web site. An easy-to-understand and comprehensive page for your questions.
P.O. Box 5801, Bethesda, MD 20824
(800) 352-9424 or (301) 496-5751
TTY: (301) 468-5981
Web: http://www.ninds.nih.gov/disorders/bells/bells.htm
BRAIN / HEAD INJURY
Brain Injury Association of America
Support and information network.
8201 Greensboro Dr., Ste. 611
McLean, VA 22102
(703) 761-0750
Web: http://www.biausa.org
Lash and Associates Publishing/Training
A treasure chest of inexpensive resources about children's head injuries for professionals and families.
Brain injured children and adults and many others are being wrongly identified as having learning disabilities, attention deficit disorder, emotional problems, etc. Lash & Associates publications and web site, with its "survivor’s stories," etc., can help everyone to identify, understand, and cope with these disabilities. Their resources are inexpensive, easy to understand, and well researched.
One example of a resource that we cherish is a child’s book called Elvin, the Elephant Who Forgets. Elvin has a tree branch fall on his head; he can’t count his figs, he gets mixed up at school and doesn't get along with his friends. A visit to the nueropsychologist helps him understand that he’s not a bad little elephant... he has a brain injury. This paperback book can help children, friends, and classmates understand brain injury.
We salute the vast, inexpensive, and useful resources of Lash & Associates. For your free catalog and one free "Tip Card" (you have the choice of 35 different subjects) see their web site.
Marilyn Lash
708 Young Forest Dr.,
Wake Forest, NC 27587
(919) 562-0015
Web: http://www.lapublishing.com
Lash Publishing has just added three new products. Click the title to link to Lash Publishing for a full description and ordering information:
Branches to Recovery - A terrific CD-ROM that will help families, clinicians, educators and advocates understand the effects of brain injury in children. With English and Spanish options, this CD is a valuable resource for families, hospitals, rehabilitation programs and agencies.
Item: BRRE $25
Take Two: After Traumatic Brain Injury - This 16 minute video show the educational challenges faced by three youths as they return to school. This is an ideal in-service tool for educators and clinicians, as well as families.
Item: TTWO $20
Neurospsychological Management of Mild Traumatic Brain Injury - Here is the comprehensive and practical textbook that deals with the cognitive and emotional sequelae of mild traumatic brain injury.
Item: NMMT $55 |
tbihome.org (Traumatic Brain Injury web site)
An online community for those suffering from a traumatic brain injury.
Web: http://www.tbihome.org
BRAIN TUMOR
American Brain Tumor Association
2720 River Rd., Des Plaines, IL 60018
(800) 886-2282 - Patient Line
(847) 827-9910
E-mail: info@abta.org
Web: http://www.abta.org
The Brain Tumor Society
- Newsletters, meetings, support, etc.
124 Watertown St., Ste. 3-H
Watertown, MA 02472
(617) 924-9997 or (800) 770-8287
E-mail: info@tbts.org
Web: http://www.tbts.org
National Brain Tumor Foundation
"Giving Help, Giving Hope" is the motto of this information and support network.
22 Battery St., Ste. 612
San Francisco, CA 94111-5520
(800) 934-CURE - Patient Line
(415) 834-9970 - Office Line
E-mail: nbtf@braintumor.org
Web: http://www.braintumor.org
BURNS
Phoenix Society for Burn Survivors, Inc.
Powerful support network. Coping Strategies for Burn Survivors and Their Families is a fabulous resource.
Two additional resources from the Phoenix Society are:
- Helping Children Heal the Effects of Loss and Trauma After Burn Injury - By Megan Bronson RN, MSN, CS. We love this booklet! Twenty-three pages with tools to define, identify, and support the grief, loss, and trauma that come with children's burns. Social Workers and Child Life Specialists take note!
- Lane's Road Home (video) - Narrated by Megan Bronson RN, MSN, CS. A video journal of one family and their lives after their daughter, Lane, had been burned over 85% of her body. This is a wonderful film. A favorite part of ours is when Lane's dad tells how hard it was for him to ask for help and how important he feels it is for dads to ask for help. This top quality resource is free!
Amy Acton, Executive Director
2153 Wealthy St. SE, #215
East Grand Rapids, MI 49506
(616) 458-2773 or (800) 888-BURN (2876)
E-mail: info@phoenix-society.org
Web: http://www.phoenix-society.org
Joel
By Joel Sonnenberg. Joel was badly burned in an auto accident when he was a toddler. This new, welcome hardcover book is Joel telling us his story. We are invited into the clever, and sometimes very difficult, ways Joel worked out his life as a child and teen. Our reviewers thought this book would be useful for any teen dealing with being “different.” We agree and also think it would make a fine resource for any disability awareness education program. At your book store.
Love Greg & Lauren - A Powerful True Story of Courage, Hope, and Survival
By Greg Manning. On September 11, Greg's wife Lauren was critically burned in the entrance of the World Trade Center. This is her husband's riveting day-by-day account of Lauren's winning the battle for life, of her triumph over the greatest obstacles, and of the remarkable healing power of Lauren and Greg's love for each other and for their baby son, Tyler. We feel this book is the best education about burn survivorship that we have ever read.
Publisher: Bantam, 2002
CANCER - Resources for Everyone
Books by Dr. Wendy Harpham
Dr. Harpham's books are the most thorough, patient-centered tools for dealing with cancer that we have found. Her long bout with cancer forced her to give up her medical practice, but we are all the winners because of her dedication to the clear, easy, practical education of patients, families, and professionals. She is a wife and the mother of three children. “Just what the doctor ordered,” or should order, is how we feel about these up-to-date books. Be sure you get the latest edition of each as they have been printed several times. Her web site is a good place to take a look at the contents of the books.
- Diagnosis Cancer - Your Guide to the First Months of Healthy Survivorship
- When A Parent Has Cancer - A Guide to Caring For Your Children (Becky and the Worry Cup, a book for children, is included.)
- After Cancer - A Guide to Your New Life
- The Hope Tree - Kids Talk About Breast Cancer - Co-authored with Laura Mumeroff and illustrated by one of our favorite illustrators, David McPhail.
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Happiness in a Storm - Be sure to take a look at this new book by Dr. Harpham that is due for release in September 2005.
P.O. Box 835574, Richardson, TX 75083-5574
Web: http://www.wendyharpham.com
National Cancer Institute
The hotline is available 9 a.m. - 4:30 p.m. in your time zone. They will answer or find the answers to all your questions. The NCI web page links health professionals and the public to their vast free publications and to CancerNet for clinical trial information, etc. A few of our favorites are:
- Facing Forward: A Guide for People with Cancer
- Answers About Pain Control: A Guide for People with Cancer and Their Families
- Managing Cancer Pain: A Guideline for Patients
- Spanish books available. Free.
- NCI Public Inquiries Office, Ste. 3036A
6116 Executive Blvd., MSC8322
- Bethesda, MD 20892-8322
(800) 4-CANCER
Web: http://www.cancer.gov
Support for People with Oral and Head and Neck Cancer (SPOHNC)
Their top-notch newsletter and web site have in-depth articles written by and for patients and professionals.
- Online newsletter
- Chapters
Nancy Leupold
P.O. Box 53
Locust Valley, NY 11560-0053
(800) 377-0928 or (516) 759-5333
E-mail: info@spohnc.org
Web: http://www.spohnc.org
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Adenoid Cystic Carcinoma Foundation (ADEN-CYST)
This nonprofit network provides support and information for this rare cancer.
Nancy Whitman, Co-Chair
Monroe, MI
Web: http://www.paonline.com/knippd/acc/
The Cancer Poetry Project: Poems by Cancer Patients and Those Who Love Them
Edited by Karen Miller. Nancy Sully has been dealing with a rare cancer of the jaw since 1979 and has had her jaw replaced twice. Nancy says that other than difficulties eating she is doing well right now, "though the future, as always, is uncertain."
As a cancer survivor and a poet whose submission to The Cancer Poetry Project was not accepted (!), I feel myself uniquely qualified to review this remarkable anthology. If you can lay hands on it, read it, learn, be moved by it. These wonderful poems are as different from each other as their authors, and as the ways cancer may impact our lives. But they share and unflinching honesty, a willingness to experience and explore the truth of the disease, and never descend into cliche or sentimentality. Anyone, cancer patient, those who love and care for them, poetry lover, or general reader with a willingness to enlarge their horizons would profit by reading The Cancer Poetry Project.(Reviewed by Nancy Sully.)
Publisher: Fairview Press
Choices in Healing, Integrating The Best of Conventional and Complementary Approaches to Cancer
Be sure to get the latest edition! Michael Lerner gives a detailed, comprehensive overview of available choices in cancer care. Paperback.
Publisher: MIT Press, Cambridge, MA
Clinical Trials
To find out about clinical trials going on all over the world, see the National Institute of Health web site.
Web: http://www.clinicaltrials.gov
Eating Well Through Cancer
By Gerald Miletello MD and Holly B. Clegg. An oncologist and a cookbook author team up to produce this welcome book that has nourishing solution for many unwelcome "side effects" of cancer treatment. Included in the book is everything from nutrition advice for the day of chemotherapy to delicious and clever ways to add protein laden and soft foods that sooth and nourish.
Publisher: Holly B. Clegg
Breast cancer survivors can get a free copy by going to http://www.livingwithit.org.
Face Value - Coping with Facial Disfigurement
In this paperback book, Linda Shafritz documents her and her family's life after she lost her eye to cancer. Very comforting book. For a free copy (while they last), write or e-mail Let's Face It (address at bottom of page). |
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The Healing Jaw
By Susan Beaudette RN. If you have had jaw or palate surgery yesterday or 30 years ago, this cookbook is a teaching tool for patients, parents, and professionals. From Susan's Zip-N-Squeeze eating device to her recipes our bodies can be nourished to better health. Some have said that one of the worst things about jaw surgery is constipation. Susan deals with the hidden health hazards that come with palate or jaw surgery. See Zip-N-Squeeze for contact and ordering information.
Publisher: Zip-N-Squeeze
The Human Side of Cancer, Living with Hope, Coping with Uncertainty
By Jimmie C. Holland, M.D. and Sheldon Lewis, Memorial-Sloan Cancer Center. This book can lead all of us dealing with cancer or any chronic illness to be the best care givers we can be.
Mercy Me! Cancer Prayers, Poems and Psalms
Mary L. Roark's delightful paperback book presents a faith perspective to persons who are or want to be close to their spirit world during cancer treatment and recovery. She wrote this little poem for us to use here:
Hair Today, Gone Tomorrow
Those who love me, love me
with or without hair
with or without energy,
with or without extra pounds,
with or without body parts,
The others do not matter. ©2002
Publisher: Morgan Publishing Inc., Naples, FL
E-mail: RoarkMary@aol.com
National Coalition for Cancer Survivorship (NCCS)
- Books, meetings, advocacy
Ellen Sovall, Executive Director
1010 Wayne Ave., Ste. 770
Silver Spring, MD 20910
(301) 650-9127
(877) 622-7937 - Publications
E-mail: info@canceradvocacy.org
Web: http://www.canceradvocacy.org
Oral Cancer Foundation
Two important videos:
- What You Should Know About Oral Cancer - Hazards of Smokeless Tobacco (Education Program)
- Xerstomia - Dry Mouth - A video that teaches innovative ways to deal with this disability.
3419 Via Lido, #205
Newport Beach, CA 92663
(949) 646-8000
E-mail: info@oralcancerfoundation.org
Web: http://www.oralcancerfoundation.org/
Radiation Treatment and Your Mouth
Chemotherapy and Your Mouth
Oral Health, Cancer Care, and You - Fitting the Pieces Together
These pamphlets produced by the National Oral Health Information Clearinghouse should be part of every persons cancer care! Easy to read and so important to your life after treatment. See the National Oral Health Information Clearinghouse for contact and ordering information.
CANCER - Resources for Children and Families
Candlelighters Childhood Cancer Foundation
P.O. Box 498,
Kensington, MD 20895-0498
(800) 366-2223 - Parent Hotline
(301) 962-3520 - All other calls
E-mail: @candlelighters.org
Web: http://www.candlelighters.org
Childhood Cancer,
A Handbook from St. Jude Children's Research Hospital
Editors Grant Steen, Ph.D. and Joseph Mirro, MD. Professionals and families are singing the praises of this sensitive, detailed, (600-page!) well-written book. Questions are answered and medical details of all treatments are here for the reader. We think all libraries should have copies and that this would make a super gift to any family facing childhood cancer.
Publisher: Presses Publishing, 2000
Childhood Cancer Survivors
A book by Keene, Hobbie, and Ruccione. We welcome this detailed and well-presented book. The multiple short and long-term effects to the spirits, bodies, and minds of childhood cancer survivors and their families are all here. This book should spark creative, realistic, post treatment plans.
Publisher: O'Reilly & Associates, Inc.
The Hope Tree,
Kids Talk About Breast Cancer
By Laura Numeroff & Wendy S. Harpham, MD. Illustrations by David McPahil. A book for children about a parent's cancer does not get much better than this one! Each page with David McPahil's illustrations would make a super poster. The real issues of children (and all of us) are stated in their words and then illustrated by a McPahil "animal family." Thanks to the Susan G. Komen Breast Cancer Foundation for this important new hardcover book.
Publisher: Simon Schuster
Kids' Cancer Pages, National Childhood Cancer Resource Directory
Created by the Children's Cancer Association of Portland, Oregon. This directory covers all the issues - from where to begin your search for information to life after cancer.
Children's Cancer Association
7524 SW Macadam, Ste. B
Portland, OR 97219
(503) 244-3141
E-mail: office@e-cca.org
Web: http://www.ChildrensCancerAssociation.org
The Paper Chain
By Blake, Blanchard, Parkinson. This delightful children's book is written for the child age 3-10 whose parent is undergoing chemotherapy or radiation therapy.
Publisher: Health Press
PO Box 37470, Albuquerque, NM, 87176
(877) 411-0707
E-mail: goodbooks@healthpress.com
Web: http://www.healthpress.com
Sammy's Mommy Has Cancer
By Sherry Kohlenberg. Sharing this beautifully illustrated book, a family can experience a sense of safety and encouragement. Ages 2-8.
Publisher: Magination Press
What About Me?
A Booklet for Teenage Children of Cancer Patients
First copy free. Call for additional prices.
Cancer Family Care, Cincinnati, OH
(513) 731-3346
The Year My Mother Was Bald
By Ann Speltz.
Publisher: Magination Press
CLEFT LIP/PALATE
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A Beautiful Child (video)
The video is presented as a message of hope and encouragement, and an introduction for parents who have just learned that their child has a cleft. This 25-minute video includes interviews of parents who discuss their experiences of first learning about and raising an infant born with a cleft lip and/or cleft palate, and includes the perspective of an adult who was born with a cleft lip.
With good humor and openness, parents describe how their perspective, understanding, and outlook changed as a result of caring for a child born with a cleft.
The video includes many photos of the children before and after their surgeries, and is divided into the following five chapters:
- Finding Out
- Concerns and Misconceptions
- A New Baby
- Early Surgeries
- A New Perspective
A valuable part of all birthing centers.
Contact Paula Miller
(703) 426-9815
Web: http://www.virginia-smiles.org
Cleft Advocate
An online resource for patients and families dealing with cleft lip and palate. Founded by a parent, Debbie Oliver, who is truly "Tackling the Health Care and Insurance Issues that Concern You."
- Family to family networking, articles, etc.
- Parent conferences
P.O. Box 751112, Las Vegas, NV 89136-1112
(702) 769-9264
E-mail: debbie@cleftadvocate.org
Web: http://www.cleftadvocate.com
The Cleft Palate Story
A parent's guide, edited by Dr. Samuel Berkowitz. A primer for parents of children with cleft lip and palate. Answers to all the questions parents have.
Publisher: Singular Publishing Group
Face First (video)
An award-winning video documenting birth to adulthood of four people with facial disfigurement. Director, Mike Grundmann, was born with a cleft lip and palate and this video tells the stories with humor and depth. Call for pricing.
Fanlight Productions
P.O. Box 1084, Harriman, NY 10926
(800) 937-4113
Web: http://www.fanlight.com/catalog/films/259_ff.shtml
Director, Mike Grundmann
P.O. Box 26951
Santa Ana, CA 92799-6951
(949) 722-7720
E-mail: mikegrundmann999@hotmail.com
Web: http://www.mikegrundmann.com
A Parent's Guide to Cleft Lip and Palate
By Moller. One parent has said that this book should be required reading for every new parent of a child with a cleft lip or palate!
Publisher: University of Chicago Press
Perspectives in Management with an Introduction to Craniofacial Anomalies
Text book.
Publisher: Singular Publishing Group
Prescription Parents, Inc.
Network in New England for people with cleft lip and palate. Their web site offers practical, detailed information on all aspects of parenting a child with a cleft - breastfeeding, solid foods, hearing, behavior, etc. Top notch resource!
45 Brentwood Circle, Needham, MA 02492
(781) 431-1398
Web: http://www.samizdat.com/pp1.html
Rotary International Thousand Smiles Foundation
Rotary International performs free craniofacial surgery in Mexico and Costa Rica.
P.O. Box 606, Bonita, CA 91908-0606
(619) 470-2885
E-mail: information@thousandsmiles.org
Web: http://www.thousandsmiles.org/
Someone Like Me
A Booklet for Children Born with Cleft Lip and Palate
Michael Fisbaough has written a detailed, beautifully illustrated book about a child born with a cleft lip and palate. Welcome gift.
Diane Wachendorff
Face to Face of Indianapolis
506 Maxine Manor, Brownsburgh, IN 46112-1535
(317) 852-3676
Understanding Cleft Lip & Palate, A Guide for New Parents (video)
This FREE film is the best we have seen on this subject! The film documents the needs of all new parents who have a child born with a cleft lip/palate or any other facial disability that needs medical attention. Professional and parent insights are beautifully shared with the audience. We think it should be part of all medical education. All new parents can gain a depth of understanding about their own needs and the needs of their child. See Foundation for the Faces of Children for contact information.
CRANIOSYNOSTOSIS
For a medical explanation of this syndrome, please see the Crouzon Support Network’s web site at http://www.crouzon.org.
CROUZON SYNDROME
Crouzon Support Network
P.O. Box 1272, Edmonds, WA 98020
(425) 672-1697
E-mail: crouzons-owner@yahoogroups.com
Web: http://www.crouzon.org
FREEMAN-SHELDON SYNDROME
Freeman-Sheldon Parent Support Group
Joyce Dolcourt
509 E Northmont Way
Salt Lake City, UT 84103-3324
(801) 364-7060
E-mail: fspsg@mail.burgoyne.com
Web: http://www.fspsg.org
GENETIC RESOURCES
Be sure to check out Genetic Alliance for more genetic information.
Chances' Choices
An inexpensive high school genetics curriculum designed around a hypothetical family with several genetic disorders.
Foundation for Blood Research
P.O. Box 190, 69 US Route One
Scarborough, ME 04070-0190
(800) 639-8605
Web: http://www.fbr.org/publications/cc/chances-choices.html
Genetic and Rare Diseases Information Center
Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the Genetic and Rare Diseases Information Center employs experienced information specialists to answer questions from the general public, including patients and their families, health care professionals, and biomedical researchers.
P.O. Box 8126
Gaithersburg, MD 20898-8126
(888) 205-2311 (M-F, 12 p.m. - 6 p.m. EST)
(888) 205-3223 TTY
E-mail: gardinfo@nih.gov
Web: http://www.genome.gov/page.cfm?pageID=10000409
Human Genome Project
A worldwide effort to map human genes and lead us to finding causes for disease and prevention information.
- Informative web site
- NHGRI Policy and Legislation Database - Free, searchable database.
Communications and Public Liaison Branch
National Human Genome Research Institute
National Institutes of Health
Bldg. 31, Rm., 4B09,
31 Center Dr., MSC 2152
9000 Rockville Pike
Bethesda, MD 20892-2152
(301) 402-0911
Web: http://www.genome.gov
Starting and Sustaining Genetic Support Groups From the Kitchen Table to the Boardroom
A gem of a resource! Available at the Genetic Alliance web site. |
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GOLDEN HAR SYNDROME
Goldenhar Syndrome Support Network
Barb Miles
9325 163 St.,
Edmonton, Alberta T5R 2P4 Canada
E-mail: support@goldenharsyndrome.org
Web: http://www.goldenharsyndrome.org
HEARING IMPAIRED (DEAFNESS)
American Society for Deaf Children (ASDC)
P.O. Box 3355, Gettysburg, PA 17325
(800) 942-2732
(717) 334-7922 TTY
E-mail: asdcl@aol.com
Web: http://www.deafchildren.org
Choices in Deafness - A Parent's Guide to Communication Options
Publisher: Woodbine House
I'm Deaf and It's Okay
Ages 4-8.
Publisher: Alfred Whitman Co.
National Institute on Deafness and Other Communication Disorders
National Institutes of Health
31 Center Drive, MSC 2320
Bethesda, MD USA 20892-2320
E-mail: nidcdinfo@nidcd.nih.gov
Web: http://www.nidcd.nih.gov
Self Help for the Hard of Hearing (SHHH)
- Education
- Annual conventions
7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
(301) 657-2249 - TTY
(301) 657-2248 - Voice
E-mail: info@hearingloss.org
Web: http://www.shhh.org
ICHTHYOSIS
Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.)
1601 Valley Forge Rd., Lansdale, PA 19446
(215) 631-1411 or (800) 545-3286
E-mail: info@scalyskin.org
Web: http://www.scalyskin.org
MOEBIUS SYNDROME
Moebius Syndrome Foundation
- Newsletters
- Annual meetings
Vicki McCarrell, President
P.O. Box 147, Pilot Grove, MO 65276
(660) 834-3406
E-mail: vmccarrell@mid-mo.net
Web: http://www.moebiussyndrome.com
My Face
By Marcia Abbott. A classic book with photos and text that tells us, from the child's point of view, the ups and downs of being born with Moebius Syndrome. See Forward Face: The Charity for Children with Craniofacial Conditions for contact and ordering information.
NAGER AND MILLER SYNDROMES
Foundation for Nager and Miller Syndromes
Newsletter, meetings, etc.
DeDe Van Quill, Director
13210 SE 342nd St., Auburn, WA 98092
(800) 507-FNMS
E-mail: ddfmns@aol.com
Web: http://www.nagerormillersynd.com/
NEUROFIBROMATOSIS
Children's Tumor Foundation
Ending neurofibromatosis through research.
95 Pine St., 16th Floor,
New York, NY 10005
(212) 344-6633 or (800) 323-7938
E-mail: info@ctf.org
Web: http://www.ctf.org
Neurofibromatosis, Inc. (NFI)
- Newsletter, videos, meetings, etc.
P.O. Box 18246, Minneapolis, MN 55418
(301) 918-4600 or (800) 942-6825
(410) 461-5213 - TDD
E-mail: nfinfo@nfinc.org
Web: http://www.nfinc.org
PIERRE ROBIN SEQUENCE
Pierre Robin Network
An information group for families affected by Pierre Robin Sequence and professionals who are interested in PRS.
P.O. Box 3274, Quincy, IL 62305
E-mail: info@pierrerobin.org
Web: http://www.pierrerobin.org
PROTEUS SYNDROME
Proteus Syndrome Foundation
They have an e-mail Family Hotline and a useful online newsletter. Their Spring 2005 newsletter has a wonderful article by Susan Powell, Ph.D., titled, Fostering a Positive Sense of Self in Children with Disabilities and Physical Differences.
4915 Dry Stone Dr.
Colorado Springs, CO 80918
Web: http://www.proteus-syndrome.org
ROMBERGS
Rombergs Connection
T. Hildebrand, Chicago Ridge, IL
E-mail: rombergs@hotmail.com
Web: http://www.geocities.com/HotSprings/1018
SCLERODERMA
Scleroderma Foundation
12 Kent Way, Ste. 101, Byfield, MA 01922
(978) 463-5843 or (800) 722-HOPE (4673)
E-mail: sfinfo@scleroderma.org
Web: http://scleroderma.org
SJOGREN'S SYNDROME
Sjogren's Syndrome Foundation
8120 Woodmont Ave., Ste. 530, Bethesda, MD 20814
(301) 718-0300 or (800) 475-6473
E-mail: SSF@sjogrens.org
Web: http://www.sjogrens.org
Sjogren's Syndrome Handbook
Publisher: Oxford University Press
STICKLER
Stickler Involved People
International Group Coordinator
KT12 2AZ England
011-441-932-229421
U.S. Coordinator, Pat Houchin
15 Angelina Dr., Augusta, KS 67010
(316) 775-2993
E-mail: sip@sticklers.org
Web: http://www.sticklers.org
TMJ
TMJ Association Ltd.
The January 2002 issue of TMJ Science is a wonderful resource journal full of presentations that were given at the Second Scientific Meeting of the TMJ Association in May 2002. This is not a medical journal but offers reports and recommendations about understanding and work to be done about joint and muscle dysfunction of the tempromandibular joint.
P.O. Box 26770, Milwaukee, WI 53226-0770
(414) 259-3223
E-mail: info@tmj.org
Web: http://www.tmj.org
TREACHER COLLINS SYNDROME
Treacher Collins Connection
A parent support and information network for families.
P.O. Box 156, Boston, MA 02131
(704) 545-1921
E-mail: tom@tccconnection.org or
judy@tccconnection.org
Web: http://www.tcconnection.org
TRIGEMINAL NEURALGIA
Trigeminal Neuralgia Association
2801 SW Archer Rd., Ste. C,
Gainesville, FL 32608
(352) 376-9955
E-mail: tnanational@tna-support.org
Web: http://www.tna-support.org
VASCULAR BIRTHMARKS
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AVM Arteriovenous Malformation - Funny Face
Deborah Breslow is a parent whose son has AVM, a difficult condition to diagnose and treat. This book, with its lovely illustrations, tells the story of the family's medical and social adventures from a parent and child perspective. We came away from the book with a clear understanding of the complexities of parenting a child with this facial anomaly and with an understanding of this rare syndrome. We caution parents to read the book before they read it to their child due to details that may give unwanted stress to the child. We welcome this informative booklet and Deborah as a resource.
FunnyFace, Wycoff, NJ
E-mail: funnyfacestory@aol.com
Gianna's Wild Strawberry
A children's story about hemangioma birthmarks. By Dana Roberson Guerra, illustrated by Molly Troxell. The complete story is on the web site, but the illustrations and book would make a great gift. It is a true story and full of how one family copes.
Publisher: Bridge Press, 1998
Web: http://www.enter.net./~happymail/index.html
Growing Up With A Facial Hemangioma:
Parent and Child Coping & Adaptation
Pediatrics (pg.446, Vol.101, No.3, March 1998)
Hemangioma and Vascular Malformation
Free to parents. Published by AboutFace and Cleft Palate Foundation. Contact the Cleft Palate Foundation for ordering information.
NOVA — National Organization of Vascular Anomalies
For 10 years this support network (formally Hemangioma Newsline) has been working with adults and children around the issues of living with hemangiomas and vascular malformations.
P.O. Box 0358, Findlay, OH 45839-0358
(419) 425-1593
E-mail: hemangnews@msn.com
Web: http://www.novanews.org
"What's Wrong with Courtney?"
Story of parents whose 12-year-old daughter, Courtney, was born with Sturge-Weber Syndrome. Ladies Home Journal (Aug 1993, pg. 22-26) at your library.
VELO-CARDIO-FACIAL SYNDROME
Northeast VCFS Support Group
2 Lansing Dr.,
Salem, NH 03079
(603) 898-6332
E-mail: MLADJA@aol.com
Velo-Cardio-Facial Syndrome Educational Foundation
P.O. Box 874,
Milltown, NJ 08850
(732) 238-8803 or (866) 823-7335
E-mail: info@vcfsef.org
Web: http://www.vcfsef.org
VISUAL IMPAIRMENT (BLINDNESS)
Blind Children's Center
A wonderful resource is First Steps: A Handbook for Teaching Young Children Who Are Visually Impaired.
Los Angeles, CA
(323) 664-2153 or (800) 222-3567 - In California
Web: http://www.blindchildrenscenter.org
Children with Visual Impairments - A Parent's Guide
Publisher: Woodbine House
VITILIGO
National Vitiligo Foundation
611 South Fleishel Ave., Tyler, TX 75701
(903) 531-0074
E-mail: vitiligo@tmfhs.org
Web: http://www.nvfi.org/
VON HIPPEL LINDAU
Von Hippel Lindau Family Alliance
Their June 2000 newsletter contains a classic article called, "To the School Nurse," which points out the invaluable medical, educational, and liaison tasks that the school nurse brings to our communities. Read it on their web site.
171 Clinton Rd., Brookline, MA 02445-5815
(800) 767-4VHL
E-mail: info@vhl.org
Web: http://www.vhl.org
WEGENER'S GRANULOMATOSIS RESOURCES
Wegener's Granulomatosis Association International
A powerful nonprofit network dedicated to the needs of patients, families and professionals who are dealing with this complex disorder.
P.O. Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
E-mail: wga@wgassociation.org
Web: http://www.wgassociation.org
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