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International Foundation for Optic Nerve Disease

 
Funding research and disseminating information on causes, prevention and treatment.
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IFOND research | LHON treatment prospects | Mitochondrial Genome Editing | COVID-19 and LHON | LHON talks | Pay it forward | Mitochondrial Regulation | Avoid BAK eye drop preservative, etc. | We experiment with cigarette smoke so you need not. | Viral vector trials | EPI-743 LHON trials | Idebenone LHON trials

Digests: NEI News | Mitochondrial Disease News LHON | ARVO Journals LHON | PubMed LHON | Europe PMC LHON | MRC-MBU features

Links: contents | collections | help | reviews | reprints | topics | articles | searches | journals | texts | dictionaries | schools| images

Coping with blindness

Practical support for the visually impaired:

Building Critical Milestone Skills for a Visually Impaired Infant/Toddler

Parenting with Disabilities: A Guide to Home Modifications

How Our Vision Changes as We Age

How to Set Up a Productive Home Office if You Are Blind or Have Low Vision

College Guide for Students with Visual Impairments

The Child Mind Institute is an independent, national nonprofit dedicated to transforming the lives of children and families struggling with mental health and learning disorders.

Home, Safe Home: Getting Started with Accessible Home Security

The blind readers page from the Chinasona Foundation LA California

American disability assistance resources compiled by Ability Village

American disability assistance resources found on DuckDuckGo search

LHON.org compiled practical advice in the American context. Nice.

The AbilityOne Commission is a US federal agency primarily funding employment agencies for the blind in the USA. It is a result of the Wagner–O'Day_Act of 1938, a product of Franklin Delano Roosevelt's New Deal policy. They use three central nonprofit organizations to administer the programs: National Industries for the Blind [NIB], SourceAmerica and American Foundation for the Blind.

Global vision impaired resources compiled with UK focus by Laser Eye Surgery Hub UK. See also their global blindness statistics page.

Lions clubs around the world give support for visual and hearing impaired people. Contact your local club for information.

Paying it forward

We salute the affected, their families and their supporters who are taking control and getting on with their lives.
There are no people better placed to deal with a problem than those actually dealing with the problem.
Use a search engine to find web sites, blogs and social networks of real people dealing with real problems and building community.
The waves they make spread around the world.
Some great examples include:

Ability Village was built by villagers in Manipur, Northern India. Their web site.

Ability Village [USA]. Woman helps her disabled brother and offers help to others:
"This site is dedicated to making the world a more inclusive and accessible place for those with physical and/or cognitive disabilities.
Please take a look at our Disability Assistance Resources page and our Blog for information and inspiration, and be sure to use our Contact form if you’d like to say hello."

Wondermoms.org is a web site which offers information and feed back developed by mothers dealing with their special needs children.

www.girlgoneblind.com is a personal blog from someone with LHON

visionfora.blogspot.com blog.

LHON Facebook group

The Hadley School for the Blind information pages

The American Foundation for the Blind emotional impact support.

www.lhon.org/living-with-lhon

Web site of young man with LHON

www.facebook.com/groups/umdfgroup/

LHON eye society Sweden

Anne and Fred Diehl started a small non profit foundation in October 1995 resulting in significant advances in understanding Optic Nerve Disease.
If you know of other groups we should mention, please contact us.

Psychosocial impact of blindness:

Psychology of the Blind. C. F. Fraser. The American Journal of Psychology. Vol. 28, No. 2 (Apr., 1917), pp. 229-237

Visual Impairment: Understanding the Psychosocial Impact. Medscape interview. An Expert Interview With Khadija S. Shahid, OD, FAAO

Coping with sudden blindness. Hoehn-Saric R, Frank E, Hirst LW, Seltser CG. J Nerv Ment Dis. 1981 Oct;169(10):662-5.

Psychology Wikia. Blindness

Blind Aid Institutes

American Foundation for the Blind

Canadian National Institute for the Blind

Royal National Institute for the Blind

Royal Society for Blind Children

Clinical trials information

ClinicalTrials.gov

Wikipedia entry Clinical Trials

Centrewatch list of government and industry clinical trials

Eye hospitals and universities

See Schools, IFOND directory of US university departments of ophthalmology, and IFOND directory of US optometry schools.

Information and Articles

Partners for Sight

VisionAWARE Self-Help for Vision Loss

NIH Health Information

MedlinePlus Optic Nerve disorders definitions and links. Patient help.

Margrain. Minimizing the Impact of Visual Impairment. eBMJ ; 1999 318 (7197) 1504

Email/Forum support groups

Jim Leeder's LHON pages

Foundations for support and research

International Foundation for Optic Nerve Disease
We are an all volunteer registered non profit organization established in October 1995.
We have very low operating expenses.
We allocate research funds with scientific board oversight in a direct fashion, minimizing administrative fees.
IFOND funded research has resulted in significant breakthroughs in the understanding of the clinical course of the mitochondrial genetic eye disease, LHON.
The research found risk factors for its expression and has pointed to prevention and potential treatment.

A sampling of some other eye research funding bodies:

National Eye Institute The US government eye research funding institute. See the Leber Hereditary Optic Neuropathy search

National Alliance for Eye and Vision Research American eye professional lobby / advocacy group.

United Mitochondrial Disease Foundation US charity which supports research on inherited mitochondrial diseases.

National Organization for Rare Disorders [NORD] Their LHON page with links to other foundations.

Fighting Blindness Foundation [USA] Sponsors retinal disease research.

Mito Action US charity supporting those dealing with mitochondrial diseases.

Medical Research Council UK government medical research funding. See Eye disease search.

LHON society UK LHON charity

University of Toronto, Mito2i. Canadian granting and educational body for mitochondrial disease. "MITO2i aims to deliver supporting technologies, integrative platforms, and interdisciplinary knowledge that will lead to a paradigm shift in the way clinicians approach the diagnosis and treatment of disease and consider the potential role of mitochondrial dysfunction in multiple and prevalent medical conditions."

Canadian Institutes of Health Research The Canadian Federal Government health research funding body. CIHR Neuroscience research arm.

Canada Research Chairs Canadian government funding for university research

Innovation Canada Canadian government funded foundation for scientific research infrastructure support

LHON Canada Canadian LHON charity

National Health and Medical Research Council Australian Government medical funding body.

Centre For Eye Research Australia Professional Australian eye research group

Mito Foundation Australian funding charity for mitochondrial diseases

Retina Australia Australian inherited eye disease research charity

Glaucoma Research Foundation

Glaucoma Australia

Glaucoma UK

Fighting Blindness Irish patient led charity

Sightline directory RNIB search for UK eye services and charities

Royal College of Ophthalmologists charities list UK eye services and charities


Efficient funding

IFOND is an extremely lean, all volunteer 501(c)(3) tax status registered nonprofit. Our process minimizes costs and maximizes funding for researchers' direct, non administrative expenses. All donations are tax deductible in the United States of America. Our recent tax returns are here or also here. Our scientific board includes many of the prominent world leading published researchers in optic neuropathies. If this big bang for your buck model appeals to you, please donate. If you are a researcher in optic neuropathy, we welcome your funding application.

IFOND welcomes questions and comments

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The International Foundation for Optic Nerve Disease
P. O. Box 777, Cornwall NY 12518, USA.
Phone/Fax: (845)5348606
Email: ifond@aol.com
Web site: http://www.ifond.org/


IFOND is registered service mark of The International Foundation for Optic Nerve Disease, est. October 1995.

Copyright 1999-2020, International Foundation for Optic Nerve Disease.


The information contained on this website should not be considered medical guidance or professional advice. IFOND is not responsible for errors or omissions in information provided on this site or actions resulting from its use. IFOND does not publish all information from all available sources on optic nerve disease. IFOND is not responsible for the validity of the studies or reviews nor is it an advocate of studies or reviews mentioned on or linked from the IFOND web site. IFOND does not endorse or recommend participation in any particular clinical trial or treatment protocol which may be mentioned on this site. Direct any questions concerning your personal health to your appropriate health care professional.