Wednesday, November 09, 2011

Why should I get involved?

I am sure that the title of this post is the question that many people ask themselves when I post about the Foundation Fighting Blindness and their quest to fund preventions, treatments or even a cure for devastating hereditary blinding diseases.  Heck, before this happened to our family, I would have asked the same question.  Now it is all very clear to me.

Let me clarify a few things by sharing a few facts with you: 

The urgent mission of The Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.
 
• More than 10 million Americans of every age and race suffer vision loss from these blinding diseases.
 
• The Foundation has funded thousands of research studies at hundreds of prominent institutions worldwide. Currently, the Foundation funds 138 grants at 76 institutions.
 
• The Foundation funds leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.
 
• Since its inception in 1971, the Foundation has raised more than $425 million.
 
• RP and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.

• Leading retinal research scientists praise the advances enabled by The Foundation.

• Age-related macular degeneration has inherited risks and is characterized by a progressive loss of central vision. AMD is the leading cause of blindness in adults over age 55 in the U.S. and other developed countries.

That last one is the real kicker.  Macular Degeneration is a blinding eye disease that will show up in many of your families as they age.  No family is exempt from these horrible diseases.  It just so happens that it has touched our young daughter now and yes, while that is tragic - it is also tragic to lose sight at any age.  We are truly all fighting the same battle.

Please think about the many people that will be effected by these diseases if nothing is done to change the future.
“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” ~Helen Keller
www.fightblindness.org/goto/katie.starr

2 comments:

PletcherFamily said...

FFB is an amazing organization. We would be where we are with Finley's LCA diagnosis and research that is being done without them.

Tammie said...

When I think of your question, I know that it is because of our children that we need to get involved.