Facebook Pixel
EmpowHER Guest

Optic Nerve Hypoplasnia

By Anonymous November 23, 2009 - 9:21am
Rate This

My 16 month old great granddaughter was just diagnosed with ONH. She has no vision in her left eye and limited vision in her right eye. The only information I see online talks about stem cell research in China or Germany. Is there anything being done in the US for children with ONH? Thank you, Patti Kelly - Boise ID

Add a Comment1 Comments

HERWriter Guide

Dear Patti

Thanks for your question and welcome! I'm sorry that your great granddaughter is dealing with this.

ONH happens in-utero as baby is growing - the optic nerve does not develop as needed. Unfortunately there is no cure for this condition right now.

Yale University is currently doing a study in children with this condition but it started a year ago. However, it's ongoing - you can read about the study here and contact information is provided : http://clinicaltrials.gov/ct2/show/NCT00825591

The One Small Voice Foundation are looking for children to assist in research about Optic Nerve Hypoplasia. You can contact them here : http://www.onesmallvoicefoundation.org/science_borchert.html

Finally, Cigna offers a list of organizations involved with the study and support of ONH. Here is part of their list :

Human Growth Foundation
997 Glen Cove Avenue
Glen Head, NY 11545
Tel: (516)671-4041
Fax: (516)671-4055
Tel: (800)451-6434
Email: hgf1@hgfound.org
Internet: http://www.hgfound.org/

MAGIC Foundation for Children's Growth
6645 W. North Avenue
Oak Park, IL 60302
Tel: (708)383-0808
Fax: (708)383-0899
Tel: (800)362-4423
Email: mary@magicfoundation.org
Internet: http://www.magicfoundation.org

11435 Cronhill Drive
Owings Mills, MD 21117-2220
Tel: (410)568-0150
Fax: (410)363-2393
Tel: (800)683-5555
TDD: (800)683-5551
Email: info@blindness.org
Internet: http://www.fightblindness.org

The Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring, MD 20910
Tel: (301)565-3842
Fax: (301)565-3843
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org/

Diabetes Insipidus Foundation, Inc.
5203 New Prospect Court
Ellicott City, MD 21043
United States
Tel: (410)480-0880
Email: info@diabetesinsipidus.org
Internet: http://www.diabetesinsipidus.org

National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown, MA 02472
Tel: (617)972-7441
Fax: (617)972-7444
Tel: (800)562-6265
Email: napvi@perkins.org
Internet: http://www.napvi.org

National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
Tel: (410)659-9314
Fax: (410)685-5653
Email: nfb@nfb.org
Internet: http://www.nfb.org

American Foundation for the Blind
11 Penn Plaza
Suite 300
New York, NY 10001
Tel: (212)502-7600
Fax: (212)502-7777
Tel: (800)232-5463
TDD: (212)502-7662
Email: afbinfo@afb.org
Internet: http://www.afb.org

Blind Children's Fund
311 W. Broadway
Suite 1
Mt. Pleasant, MI 48858
Tel: (989)779-9966
Fax: (989)779-0015
Email: bcf@blindchildrensfund.org
Internet: http://www.blindchildrensfund.org

Council of Families with Visual Impairment
1155 15th St. NW
Suite 1004
Washington, DC 20005
Tel: (202)465-5081
Fax: (202)465-5085
Email: info@acb.org
Internet: http://www.acb.org/

FOCUS Families--For Our Children's Unique Sight
2453 Emerald Street
San Diego, CA 92109
United States
Tel: (858)273-1473
Tel: (866)362-8750
Email: support@focusfamilies.org
Internet: http://www.focusfamilies.org

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

Blind Children's Center
4120 Marathon Street
Los Angeles, CA 90029-3584
Tel: (323)664-2153
Fax: (323)665-3828
Tel: (800)222-3566
Email: info@blindchildrenscenter.org
Internet: http://www.blindchildrenscenter.org

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/


Let me know if there is more I can for you and please keep us updated. Thank you for being such an advocate for your little one!

November 23, 2009 - 12:58pm
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.