President's Letter

Dear Friends of the Western New York Chapter:

My name is Sarah Malburg and I am excited to be the 2017 WNY Chapter President!  Over the past five years, the WNY area has shown growth in fundraising and spreading awareness of the FFB and my hope is to continue in this direction for the 2017 year!

I want to thank you for your interest in the Foundation Fighting Blindness and its mission to find treatments as well as preventative measures to fight degenerative retinal diseases.

The Foundation Fighting Blindness was established in 1971 and today is the world’s largest non-governmental funder of research for inherited retinal degenerative diseases.  Its success would not be possible without people like YOU who are helping to make a difference and find a cure!

Today, it is more important than ever that the Foundation continues to increase its funding of research and clinical trials which are now a reality. The Western New York Chapter and its volunteers are a key component in helping raise awareness about and funding for inherited retinal degenerative diseases, such as, Retinitis Pigmentosa, Stargardt Disease, Usher Syndrome and Macular Degeneration.

As Chapter President, I would like to share my personal story with you. In 2001, I was diagnosed with Stargardt’s Disease, a juvenile form of macular degeneration.  At the time I was finishing my undergraduate studies at SUNY Fredonia to earn a BA in Music Education that same year. I was a musician on the verge of losing my sight and it was frustrating. I had to give up driving as I was deemed “legally blind” but I didn’t let it stop me from doing what I loved. I continued teaching music and went on to get my MS in Education from the University of Buffalo in 2008 and continued teaching until my family moved across country and I had my two wonderful children, boys ages 9 and 6 today. It is because of them that I fight to find a cure! Over the past 15 years I have learned a lot about retinal degenerative diseases, how to adapt to them and how to cope physically, mentally and emotionally. Over the past six years, I have been focusing my fundraising efforts and spreading awareness of the FFB by chairing our local Visionwalk, facilitating a local support group, interacting with the media, and by bringing hope to those in our community whose lives are affected by these diseases and vision loss.

The Western New York Chapter strives to provide a supportive environment for individuals who may personally be affected by a retinal degenerative eye disease, has family or friends affected or those who work closely with a visually impaired client base. Our Chapter members are focused on our mission to fund research to find preventions, treatments and cures for retinal degenerative eye diseases. Our Chapter members are helping push the research further and faster.

The WNY Chapter is one of many across the country that works hard to help people keep current on the latest research and developments concerning retinal diseases. We also provide knowledge about support services and other opportunities that are available in the WNY area by arranging to host multiple educational and social meetings throughout the year.  Chapter members often will hear from retinal and/or low vision specialists, mobility instructors, rehabilitation counselors, assistive technology specialists, low vision equipment vendors, education, vocation counselors, etc.

Our Chapter leaders also participate in the Foundation’s signature fundraiser, Visionwalk, which has raised millions of dollars for research and various other fundraisers.

I encourage you to become involved TODAY! I would love to hear from you and I welcome your participation in the Western New York Chapter! If interested, please contact me at (716)777-0997 or email sarah.malburg@yahoo.com. With your help, a cure is insight!

Warm Regards,

Sarah Malburg