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International Foundation for Optic Nerve Disease

P. O. Box 777, Cornwall NY 12518, USA
Email: IFOND@aol.com
Phone/Fax: (845) 5348606

 
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IFOND projects update December 2017

In 2017 IFOND sponsored another field study in Brazil organised by Brazilian and international researchers. They are using objective measures of electrical activity, Phototic Negative Response (PhNR), in vivo as markers of cellular function in LHON and experiments. The team includes doctors Adriana Berezovsky, Solange Salomao, Nivea Cavascan, Arthur Fernandes from UNIFESP, and Dr. Milton Filho-Moraes and his team at the Colatina clinic together with our IFOND scientific board member, Dr Rustum Karanjia. They hope to establish an ideal protocol of outcome measures against which to test the effects of any purported treatment. See the detailed funding application grant proposal here.

Below is post study correspondence from Dr Rustum Karanja and Dr Solange Salomao:

"In November 2017 the LHON Investigative Team was able to return to Colatina, Espirito Santo, Brazil to continue our research, thanks to the generous support of IFOND. The collaboration with the Soave-Brazil pedigree started in 2001 and IFOND has been instrumental in supporting the team efforts to understanding and treating this blinding disease. The latest visit to Brazil consisted of an international team of volunteer experts in electrophysiology and Neuro-ophthalmology. The team was able to reconnect with almost 50 members of the pedigree and other families afflicted by LHON. The data collected is a continuation of the work we have previously published on electrophysiology and LHON ( The Photopic Negative Response: An Objective Measure of Retinal Ganglion Cell Function in Patients With Leber's Hereditary Optic Neuropathy, IOVS 2017 May 1;58(6)). This data will be instrumental in understanding how new biomarkers can help us objectively follow patients with LHON and may hold some clues to help identify carriers who might be prone to conversion.

This effort would not have been possible without the continued support of the members of the Soave-Brazil pedigree, the team at Instituto de Olhos de Colatina, the team from the Federal University of São Paulo (UNIFESP), the Doheny Eye Institute and Doheny Eye Centers UCLA, and the Ottawa Eye Institute, with the support of Instituto da Visão (IPEPO) and IFOND."

Also, we are sponsoring a retinal biomarker study in Parkinson Disease and Alzheimer disease, both extremely important ailments with relevance to optic neuropathy and mitochondrial dysfunction. The research described here will be done by IFOND Board chair, Dr Ivan Bodis-Wollner MD DSc professor, neurologist, neuroscientist; Piotr Kozlowski MD, professor, neuropathologist; and Sofya Glazman MD research Coordinator.

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.

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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/


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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.