Listing these organizations does not constitute endorsement by
International WAGR Syndrome Association.
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Angel Flight America
Your National Charitable Aviation Network
matching people in need with resources that can provide healing and hope.
MISSION STATEMENT
Angel Flight® America (AFA) provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national
Angel Flight® America is divided into seven independent member organizations. There are six regional members (Angel Flight Central, Angel Flight Mid-Atlantic, Angel Flight Northeast, Angel Flight South Central, Angel Flight Southeast and Angel Flight West) that coordinate Angel Flight missions in the continental United States as well as Alaska and Hawaii. The seventh member, Mercy Medical Airlift, coordinates free airline tickets for Angel Flight missions of over 1,000 miles and negotiates low cost air ambulance service for individuals and families, who are in need of this special service.
http://www.angelflightamerica.org/crisis
CANADIAN FLIGHT ASSISTANCE
Provides free air transport to Canadians in financial need who must travel from their own communities to recognized facilities for medical care.
Hope Air
Proctor & Gamble Building
4711 Young Street
North York, ON Canada M2N 6K8
(416) 222-6335
Web: http://www.hopeair.org
Corporate Angel Flights
We arrange free air transportation for cancer patients traveling to treatment using the empty seats on corporate jets.
Thanks to the generosity of 530 of America's finest corporations, Corporate Angel Network has arranged more than 25,000 flights since our founding in 1981.
http://www.corpangelnetwork.org/
The NATIONAL PATIENT TRAVEL HELPLINE
provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.
http://www.patienttravel.org/
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| Aniridia and Vision Resources |
The Vision for Tomorrow Foundation -
Informative Website (aniridia/low vision info)
Free Newsletter, Research
http://www.visionfortomorrow.org
E-mail: info@visionfortomorrow.org
ANIRIDIA FOUNDATION INTERNATIONAL
Information, Conferences, Support
Free Newsletter, Research
http://www.aniridia.net
E-mail: info@aniridia.net
ANIRIDIA NETWORK INTERNATIONAL
http://www.aniridia.org.uk/
E-mail hannah@aniridia.org
Aniridia Belgium
E-mail: pera.fabrice@skynet.be
ASOCIACION ESPANOLA DE –ANIRIDIA
http://www.aniridia.com
Gêniris - formerly the French Aniridia Association
http://www.associationgeniris.free.fr/
E-mail: aniridie.france@laposte.net
Aniridia Italiana
http://www.aniridia.it/
E-mail: cqart@libero.it
Aniridia Liechtenstein
E-mail: maxped@adon.li
Asociación Mexicana de Aniridia
http://www.amda-ac.org/
E-mail: yoannaarcos@amda-ac.org
ANIRIDIA NORGE
http://www.aniridi.no/
E-mail: khhansen@tiscali.no
Gillespie Syndrome
http://www.emedicine.com/OPH/topic317.htm
http://www.gskasper.com/
kasper.gs@telia.com
American Foundation for the Blind
Provides information about local programs, including state Libraries for
the Blind (Talking Books programs are free, call for information) and
independent living skills programs.
11 Penn Plaza Suite 300
New York, NY 10001
PH: 800-232-5463
Web: http://www.afb.org
A Guide to the European Blind Union
http://www.euroblind.org/fichiersGB/visincen.html
The Glaucoma Foundation
116 John Street, Suite 1605
New York, NY 10038
PH: 212-285-0080
Web: http://www.glaucoma-foundation.org
The Hadley School for the Blind:
Offers FREE online courses in early childhood development of children with vision impairment, as well as Braille, mobility training, social skills, and more.
Web: http://www.hadley.org
The New York Glaucoma Research Institute
Promotes research into causes of Glaucoma, development of alternative
approaches to the treatment of Glaucoma, and development of a
comprehensive patient information center about Glaucoma on the Internet.
The New York Eye and Ear Infirmary
310 East 14th Street
New York, NY 10003
Tel/Fax: 212-388-9517
Email: ritchmd@earthlink.net
Web: http://www.glaucoma.net
National Association for Parents of the Visually Impaired
Excellent source of information about parenting young children with VI.
P.O. Box 317
Watertown, MA 02247
PH: 617-972-7441
Web: http://www.spedex.com/napvi
National Institutes of Health: National Eye Institute
Information about current studies and trials of new or experimental
treatments for Aniridia or related problems, such as cataracts or glaucoma.
Building 31, Rm 6A32
31 Center Dr. MSC 2510
Bethesda, MD 20892-2510
PH: 301-496-5248
Web: http://www.nei.nih.gov/
"Children With Visual Impairments-A Parent's Guide"
Edited by M. Cay Holbrook, PhD.
Available through bookstores, or can be ordered through Exceptional
Parent Magazine (800-535-1910, order # WB1790D)
"Can't Your Child See?"
E. Scott.
Excellent guide to ideas for stimulating your visually impaired child's
development.
Available through bookstores, or can be ordered through Exceptional
Parent Magazine (800-535-1910, order #PE0410D)
Schools for the Blind (US): http://www.viguide.com/vsnschools.htm
Schools for the Blind (worldwide): http://www.nyise.org/bschools.htm
Sunglasses for Children
Baby Banz - international website
Nonprescription sunglasses for children birth to 3yrs.
Order Online:
Web: http://www.babybanz.com.au
Baby Sunglasses
Very informative website designed by the mother of an infant with aniridia. Comprehensive overview of a wide variety of styles of sunglasses for babies and young children. Includes photos, reviews, tips for getting a proper fit, and manufacturer/price/ordering information.
http://www.babysunglasses.org
SoloBambini
Prescription and nonprescription glasses and sunglasses for children
birth to 7 yrs.
P.O. Box 349 Burlingame, California 94011
Tel: 650.340.1773 Fax: 650.340.1774
Email: info@solobambini.com
Web: http://www.solobambini.com
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| Assistive Technology & Computers |
Enablemart Assistive Technology
Who We Serve:
Over time, assistive technology has evolved from solutions for individuals with disabilities to everyday products for every person. As a result, EnableMart works with thousands of individuals, schools, and non-profit and government organizations each year to locate products and provide services that can assist any ability.
http://www.enablemart.com/
Texas Center for the Physically Impaired (TCPI)
A Division of Internationally for the Visually Challenged
FREE Computers for Visually Impaired Persons
TCPI provides computers, free of charge (with a $100 donation) to visually impaired persons. (Note: This service is available to residents of the United States and Canada.) We ship an average of 350 refurbished PCs per year.
For more information, go to:
http://www.handicapability.org/computers.html.
You can also call
214-340-6328 (Voice).
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| Cancer and Wilms Tumor Information |
Andrew's Story
A Book About A Boy Who Beat Cancer
by Chris Bridge (Photographer)
Email: chbridge@aol.com
The American Cancer Society
General Information about Wilm's tumor, including diagnosis and treatment.
Offers assistance inf finding physicians, hospitals, cancer centers
and treatment studies and trials.
1599 Clifton Rd., NE
Atlanta, GA 30329-4251
PH: 800 227-2345
Web: http://www.cancer.org
Canadian Cancer Society
565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(604) 872-4400
http://www.bc.cancer.ca/
Candlelighters Childhood Cancer Foundation
Offers information about helping children and families to cope, referral
to local support groups, as well as information about
"wish-granting"organizations such as Make-A-Wish.
3910 Warner St.
Kensington, MD 20895
PH: 800-366-2223
Web: http://www.candlelighters.org
Children's Cancer Web:
Internet Resources for Childhood Cancer
Webring/links to information on diagnosis, treatment, research studies.
Web: http://www.cancerindex.org/ccw
Cancer Charities & Support – International
http://cellscience.com/CANCharities.html
Children's Cancer and Leukaemia Group UK
The CCLG is a national professional body responsible for the organisation of the treatment and management of children with cancer in the UK. The Group's main remit is the coordination of national and international clinical trials, including biological studies. Other areas of activity include national cancer registration and provision of information for patients and families.
Web: http://www.cclg.org.uk
National Alliance of Childhood Cancer Parent Organisations (NACCPO)
Working with parent organisations, the government and charities to help children with cancer.
The National Alliance of Childhood Cancer Parent Organisations (NACCPO) is made up of parent run organisations that have common aims of working together to support children with cancer.NACCPO is also the UK member of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).
Aims:Share best practice between member local parent organisations in the UK and around the world, to support children with cancerTo create a national voice for parents of children with cancer, by working with medical, government and charity organisations on a national level, to address issues affecting children with cancer and their families.Widen membership to include other existing parent run organisations, or to help parents form new local organisations.
Web: www.naccpo.org.uk
National Wilm's Tumor Study Group
Federally funded study of the treatment of patients with Wilm's tumor.
Issues recommendations for treatment protocols based on follow-up data,
as well as the results of studies of complications in long-term
survivors.
FREE NEWSLETTERS http://www.nwtsg.org
Offers medical consultation services for patients. Have your physician contact the NWTSG.
National Wilms Tumor Study
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N, M2-A876, PO Box 19024, Seattle, WA 98109-1024
Phone: (206) 667-4842 or (800) 553-4878 FAX: (206) 667-6623
Email: nwtsg@fhcrc.org
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Wilms@Home!
Wilms @ Home is a childhood cancer charity since 2004 working for the benefit of children and their families who are directly affected by Wilms' Tumour (nephroblastoma). This includes having been affected in the past and present.
Many well wishes from the Wilms at Home Team!
Website in ENGLISH - RUSSIAN - DUTCH - DANISH - GERMAN
http://www.wilmsineurope.net/home.html
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WILMS-KIDS
An e-mail discussion list has been created on ACOR.org for caregivers of children with Wilms tumour called Wilms-Kids. If you're interested in meeting and talking to other folks who have dealt with (or are currently dealing with) Wilms tumour you can sign up at the following url:
http://listserv.acor.org/archives/wilms-kids.html
Welcome to Wilms Tumour dot com
We are a family who have been touched twice by Wilms tumour and wanted to have a place to share the information, resources and stories we have encountered on our journey.
We have gathered many resources here that we hope will be of as much use to others as they have been to us.
This is NOT a medical site. Please read the site disclaimer.
http://www.wilmstumour.com/index.asp
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| CaringBridge - WAGR Families |
| Choosing Home or Residential Care |
| Early Intervention/Special Education |
DISABILITY IS NATURAL The Disability is Natural web site is brought to you by BraveHeart Press, the family-owned business of Kathie Snow. The mission of this site is to encourage new ways of thinking about disability and to help create a society in which all people are valued and included. Disability is Natural!
Web: http://www.disabilityisnatural.com/index.htm
Easter Seals
Provides services that help children and adults with disabilities gain
greater independence, including child care, developmental therapies,
respite care, and recreational activities.
230 W. Monroe St., Suite 1800
Chicago, Ill. 60606
PH: 312/726-6200.
Web site: http://www.easter-seals.org
Exceptional Parent Magazine, "Parenting Your Child or Young Adult with a Disability." Monthly magazine offering encouragement and practical assistance in caring for a young person with special needs. Wide variety of informative articles by parents and professionals. Website also offers FREE online interactive seminars on a variety of topics of interest to caregivers:
http://www.eparent.com
Lekotek Toy Resource Helpline
Assistance in selecting toys or play activities for children with
disabilities.
PH: 800-366-PLAY
Web: http://www.lekotek.org
"I Am, I Can, I Will"
by Fred Rogers
A set of 5 books for young children. Helps develop a Can-Do attitude.
Promotes the sense of self-esteem which overcomes frustration. Available
through bookstores, or can be ordered from Exceptional Parent Magazine
(800-535-1910, order #PE0560D)
"Negotiating the Special Education Maze-A Guide for Parents and Teachers"
Anderson, W.
Available through bookstores, or can be ordered through
Exceptional Parent Magazine (800-535-1910, order #WB0190D)
http://www.eparent.com
NICHCY, The National Information Center for Children and Youth with
Disabilities
One stop information center with state by state contact information for
Special Education Supervisors, Disability specific departments,
Governor's Councils and more. Also offers excellent articles for
parents, such as "Special Education and the Law, What Parents Need to Know."
P.O. Box 1492
Washington, DC 20013-1492
PH: 800-695-0285
Web: http://www.nichcy.org
Sign Language:
FREE sign language instruction, glossaries, online videos, and resources:
http://www.babies-and-sign-language.com/
WrightsLaw
This Internet website is a treasure trove for both special education
information and advocacy techniques.
Offers an excellent book,
"From Emotions to Advocacy--The Special Education Survival Guide."
Available through bookstores, or can be ordered from the website.
Web:
http://www.wrightslaw.com/
Zero to Three
Promotes the healthy development of babies and toddlers. Offers "New
Visions for Parents" informational materials for parents who are
concerned about their child's development. Helps parents to understand
developmental assessment, testing, and results.
2000 M St. NW, Suite 200, Washington, DC 20036
PH: 202-638-1144
Web site: http://www.zerotothree.org
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American Cancer Society
Medical Insurance and financial Assistance for the Cancer Patient
http://www.cancer.org/docroot/MLT/content/MLT_1x_Medical_Insurance_and_Financial_Assistance_for_the_Cancer_Patient.asp?sitearea=SU&level=1
Disabled Children’s Relief Fund (DCRF)
Disabled Children's Relief Fund (DCRF), a non-profit 501(c)(3) organization, provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. Recipients are children who are blind, deaf, amputees, and who are diagnosed with Cerebral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, Rheumatoid Arthritis, Spina Bifida, Down's Syndrome, and other disabilities. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance, especially the physically challenged. In some cases, DCRF may be the last resort.
P.O. box 89Freeport
New York, New York 11520
http://www.dcrf.com
The United Healthcare Children's Foundation
To be eligible for the grants, children must be 16 years old or younger.
Families must meet economic guidelines, live in the U.S. and be covered by
a commercial health insurance plan.
For more information, visit:
www.uhccf.org
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| Genital or Urinary Issues |
Miracle-Ear Children's Foundation Information Request Form
http://www.miracle-ear.com/resources/children_request.asp
You may also request information by calling the Miracle-Ear Children's Foundation directly at 1-800-234-5422.
Deaf Friends International
PO Box 13192
Hamilton, OH
45013dfi@workersforjesus.com
www.workersforjesus.com
Deaf Friends International provides financial help to deaf children and adults around the world for scholarships, hearing aids, disaster relief, TTYʼs and other special equipment, school supplies, other worthwhile initiatives, and medical needs.
Grants are for individuals and groups, but all requests must come from teachers, school officials, doctors, social agency personnel, missionaries, or church leaders.
Requests must be sent on official stationery.
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| Housing Assistance During Hospital Stays |
RONALD McDONALD HOUSE - USA & INTERNATIONAL
The idea behind the Ronald McDonald House program is simple: Provide a "home away from home" for families of seriously ill children receiving treatment at nearby hospitals.
http://www.rmhc.com/rmhc/index.html
NATIONAL ASSOCIATION OF HOSPITALITY HOUSES INC.
A home that helps and heals is a place where families and patients may lodge overnight while receiving treatment at a medical facility. It is not for profit, serves the needs of the patient and the family, and endeavors to provide community to its guests.
http://www.nahhh.org/index.php
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Insure Kids Now! from the U.S. Department of Health & Human Services
Linking the Nations Children to Health Insurance
Your children may be eligible for free or low-cost health insurance!
You work hard to provide for your children and want to make sure they grow up strong, smart and healthy. But like many parents whose children don't have health insurance, you worry about taking care of them.
Now, you may have one less thing to worry about. Your state, and every state in the nation, has a health insurance program for infants, children and teens. The insurance is available to children in working families, including families that include individuals with a variety of immigration status.
(Materials are available that explain more about immigration and children's health insurance.)
For little or no cost, this insurance pays for:
- doctor visits,
- prescription medicines,
- hospitalizations, and
- much more.
Kids that do not currently have health insurance are likely to be eligible, even if you are working. The states have different eligibility rules, but in most states, uninsured children 18 years old and younger, whose families earn up to $34,100 a year (for a family of four) are eligible.
To learn more, go to Your State's Program
or make a free call to 1-877-KIDS-NOW for more information.
http://www.insurekidsnow.gov
Centers for Medicare & Medicare Services - from the Department of Health and Human Services
Eligibility for Medicaid, including waiver and demonstration projects, can not be determined by the Federal government. Each state has its own process and criteria for participation.
If you are looking for information about how to apply for Medicaid, including waiver and demonstration programs in your state, please contact your state Medicaid agency.
(follow this link and click on your state)
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp
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| Mental Health/Behavioral Issues |
The ARC
National foundation for persons with mental retardation and their
families. Tremendous database of information on all aspects of learning
and living with MR. Provides referral to local chapters.
500 East Border St. Suite 300
Arlington, Texas 76010
PH: 817-261-6003
Web: http://www.thearc.org
"Children with Mental Retardation: A Parent's Guide"
Edited by R. Smith
Available in bookstores, or can be ordered through Exceptional Parent
Magazine (800-535-1910, order #WB007MR)
Autism-PDD Resources Network
Outstanding Internet-based resource, with comprehensive information
covering diagnosis, treatment options, and assistance for both parents
and professionals.
Web: http://www.autism-pdd.net/
Autism Society of America
Offers printed information on Autism, including a newsletter. Many local
chapters in US.
7910 Woodmont Avenue, Suite 300
Bethesda, Maryland 20814-3067
U.S.A.
Phone: 301-657-0881 or 1-800-3AUTISM
Web: http://www.autism-society.org/index.html
National Autism Association
1330 W. Schatz Lane
Nixa, MO 65714
For information call
877-NAA-AUTISM
877-622-2884
Web: http://www.nationalautismassociation.org/helpinghand.php
The National Mental Health Association
Mental health advocacy for education, research and services:
1021 Prince Street
Alexandria, VA 22314-2971
PH: 703/684-7722
Mental Health Information Center 1-800-969-NMHA
Web: http://www.nmha.org
The National Alliance for the Mentally Ill
Advocacy group for awareness, research and treatment:
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201
PH: 703-524-7600
NAMI HelpLine: 1-800-950-NAMI [6264]
Web: http://www.nami.org
Autism & Pervasive Development Disorder (PDD)
http://www.nimh.nih.gov/publicat/autism.cfm
Obsessive-Compulsive Disorder (OCD)
http://www.nimh.nih.gov/HealthInformation/ocdmenu.cfm
Attention Deficit Hyperactivity Disorder (ADHD)
http://www.nimh.nih.gov/healthinformation/adhdmenu.cfm
Depression in Children and Adolescents
http://www.nimh.nih.gov/HealthInformation/depchildmenu.cfm
Talk About Curing Autism
http://www.tacanow.com/auditory%20_processing.htm
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What would happen to your son or daughter with special needs if something happened to you?
This is not an easy question to ask, but there are resources to help you answer it:
"Future Planning" (fact sheet)
http://www.thearc.org
"Planning for Children with Special Needs" (includes free planning/calculating tools)
http://www.metlife.com
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Partnership for Prescription Assistance
The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free.
Web: https://www.pparx.org/Intro.php
Pharmaceutical Research and Manufacturers of America
Lists companies that provide prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines.
Directory of patient assistance programs.
1100 15th St NW
Washington, DC 20002
Physican hotline: (800) 762-4636
Web: http://www.phrma.org/searchcures/dpdpap/
RxHope.com
Resource for patient assistance programs offered by federal, state, and charitable organizations.
Web: http://www.rxhope.com/default.asp
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Special Olympics:
Special Olympics is an international nonprofit organization* dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition. Special Olympics offers children and adults with intellectual disabilities year-round training and competition in 30 Olympic-type summer and winter sports.
(*Special Olympics is recognized as a tax-exempt organization under U.S. Internal Revenue Code Section 501(c)(3).
Special Olympics currently serves 2.5 million people with intellectual disabilities in more than 200 Programs in 165 countries.
1133 19th Street, N.W.
Washington, DC 20036 USA
+1 (202) 628-3630
Fax: +1 (202) 824-0200
Web: http://www.specialolympics.org/Special+Olympics+Public+Website/default.htm
Theraputic horseback riding:
NARHA
Appreciating the power of the horse to change lives
North American Riding for the Handicapped Association, Inc.
NARHA CENTERS PROVIDE EQUINE ASSISTED ACTIVITIES
Just as other professions use accreditation and licensing systems to improve the well-being of their industries, therapeutic equine professionals have a distinction of their own thanks to NARHA’s Premier Accredited Center Program. The Premier Accredited Center Program offers NARHA centers the chance to demonstrate their excellence in providing quality, professional equine assisted activities. This voluntary process recognizes NARHA centers that have met established industry standards.
National Office Physical Address:
7475 Dakin Street Suite #600 Denver, CO 80221
(800) 369-RIDE (7433)
Fax (303) 252-4610
http://www.narha.org/
Find a center: http://www.narha.org/Centers/FindCenter2.asp
United States Association for Blind Athletes
The mission of the United States Association of Blind Athletes is to increase the number and quality of grassroots-through-competitive, world-class athletic opportunities for Americans who are blind or visually impaired. We do this by providing athlete and coach identification and support, program and event management, and national and international representation. We value the life-enhancing aspects of sports and the opportunity to demonstrate the abilities of people who are blind and visually impaired.
http://www.usaba.org/
IBSA - International Blind Sport Federation
Since IBSA was founded in Paris in 1981, we have been in a constant process of evolution to adapt to the ever-changing world of sports for the blind.
IBSA is registered as a non-profit making, public interest body in Spain, and we are full members of the International Paralympic Committee (IPC), where we are the legitimate representatives of sport for the blind.
http://www.ibsa.es/eng/
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Give Kids The World Village
210 South Bass Road
Kissimmee, FL 34746
800-995-KIDS (Tel)
407-396-1114 (Tel)
407-396-1207 (Fax)
dream@gktw.org
Make-A-Wish Foundation® International
Head Office
4041 North Central Avenue
Suite 555
Phoenix, AZ 85012
USA
Web site: www.worldwish.org
Phone: (602) 230-9900
Fax: (602) 230-9627
E-Mail: international@worldwish.org
Make-A-Wish Foundation® of America
National Office
3550 North Central Avenue
Suite 300
Phoenix, AZ 85012-2127
Hours: Monday - Friday,
7:00 a.m. – 4:00 p.m. MST
Phone: (602) 279-WISH (9474)
Toll-free: (800) 722-WISH (9474)
Fax: (602) 279-0855
Web site: www.wish.org
Make-A-Wish Foundation® of Guam
Serves the Island of Guam and extends to the Commonwealth of the Northern Marianas which includes Saipan, Tinian, and Rota
Web site: www.guamwish.org
865 South Marine Drive
Orlean Pacific Plaza¸ Suite 104
Tamuning, GU 96913
Phone: (671) 649-9474
Fax: (671) 649-9030
Wish Emergency Cellular: (671) 727-6293
E-Mail: mawfguam@ite.net
Make-A-Wish Foundation® of Puerto RicoServes the entire island of Puerto Rico
Web site: www.makeawishpr.org
100 Gran Bulevar Paseos
Suite 112 MSC 476
San Juan, PR 00926-5955
Phone: (787) 281-7092
Fax: (787) 765-1945
Alternate Phone Line: (787) 283-7925
E-Mail: imendez@makeawish.org
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