International Foundation for Optic Nerve Disease

IFOND update 2013

The generous support of the donors to IFOND continues to allow important progress in investigations of Leber's Hereditary Optic Neuropathy (LHON). We have made 12 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 approximately 16 peer-reviewed publications and approximately 55 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.

As an example, Alfredo A. Sadun, who led the IFOND sponsored Brazilian/ LHON studies, was chosen this year to give keynote lecture 2 at the 2013 European Association for Vision and Eye Research [EVER] Congress in Nice, France. Dr. Sadun's keynote speech was on September 20, 2013, and is entitled: "Why The Optic Nerve is the Canary in the Coal Mine", and will expand on new understandings based on the LHON research of the mechanisms by which LHON damages the optic nerve and causes blindness. Dr. Sadun also gave a regular invited lecture on September 19 at EVER entitled: "New Concepts of Treatment for Mitochondrial Optic Neuropathies Such As Leber's Hereditary Optic Neuropathy". This will be primarily about the use of EPI-743, a third generation quinone developed and used by his team at USC and supported by IFOND.

Additionally, Dr. Valerio Carelli, also a lead investigator in the IFOND sponsored Brazilian/LHON studies, was a speaker at the same EVER meeting on September 19. His talk entitled: "The Unsolved Genetics of LHON", explains his work uncovering the environmental and genetic reasons for the variable expression of disease in LHON carriers. Hence, the work sponsored by IFOND not only will be prominent for the neuro-ophthalmology part of the meeting, but is highlighted as the most significant of investigations in vision research altogether. This has drawn much attention, including that of Stealth Peptides, a Boston based new mitochondrial pharmaceutical firm that will be sending several of their scientists to France to attend these talks on the mitochondrial mechanisms of blindness.

Dr. Sadun is also being honored by the Brazilian Ophthalmological Society in a special symposium organized in Sao Paolo, Brazil. His award will be given February 15, 2014. This date will probably set the nidus for the next field investigation in Brazil, with the team expected to attend Dr. Sadun's lecture and ceremony, and then continue on to Colatina, Brazil.

This year, IFOND began sponsoring a one year fellowship for R. Karanjia MD, Ph.D., at the Doheny Eye Institute in Los Angeles, California. The fellowship will have a focus on LHON. Dr. Karanjia has been working with Jeffrey Tran, a medical student at USC, to arrange the database from the Brazil/LHON studies in the most useful way. Tran received his degree at Stanford on electronic data analysis and brings many sophisticated ideas for this project. They have assembled a team of 8, including several post-doctoral fellows and medical students who are spending the year in Dr. Sadun's laboratories. Working in parallel teams, they are constructing a huge database that can cross reference many of the variables such as ocular conditions from LHON patients and carriers that were researched in Brazil. This work is calculated to conclude in June, 2014, with conclusions to be drawn at that time.

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. We have no salaried associates. 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 searchable here e.g. latest IRS website listed year 2019 here. Tax Year 2022 Form 990EZ and Tax Year 2022 IRS Filing Acceptance . Also see 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.

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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