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International Foundation for Optic Nerve Disease

 
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IFOND projects update December 2019

In 2019 IFOND sponsored another field study in Brazil organised by Brazilian and international researchers. Below is a post field study correspondence from Dr Solange Salomao:

Dear Fred

Our visit to Colatina was extremely successful. With IFOND's support, the expertise and collaboration with Dr. Rustum Karanjia, competent and committed UNIFESP and local teams we were able to examine 56 patients and 14 controls, reaching the expectation of 70 subjects in 2 days of testing.

Odete was very cooperative and helpful and has encouraged many of her family members to participate. Dr. Milton Moraes Filho, Dr. Milton Moraes Senior and Mrs. Ester Moraes were, as always, very generous on providing all the infra-structure with equipment and staff (all free-of-charge). Dr. Milton Filho has talked to all patients individually by the end of the examination session to answer their questions and to explain the follow-up on many different tests.

I'm attaching in this message a link to two long videos that Odete made available in youtube with information on the two first years of the LHON/Brazil project (2001 and 2002). The bad news is that they are in Portuguese. Maybe, Fred, your Brazilian daughter-in-law can help you with some translation.

Once again, I would like to thank for all the fundamental partnership that IFOND has provided in this scientific and humanitarian enterprise.

https://youtu.be/fv92teBGlCw

https://youtu.be/DRa5pEW4o-0

All my best,

Solange

The generous support of the donors to IFOND continues to allow important progress in investigations of Leber's Hereditary Optic Neuropathy (LHON). Since 2001 we have sponsored regular annual field trips to rural Brazil in order to study the largest LHON pedigree in the world. These investigations have been fully described in previous reports. They have also led to numerous peer-reviewed publications and Association for Research in Vision and Ophthalmology (ARVO) annual symposium presentations. These investigations and publications have changed the face of LHON as studied, taught and clinically treated. This is an outstanding achievement for the researchers who punch well above their weight on shoe string budgets and volunteer support.

Link to Papers IFOND helped sponsor

Here find links to published peer reviewed papers acknowledging IFOND's help. This research helped stimulate a cascade of broad research on mitochondrial and optic nerve disease.

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.

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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.

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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.