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"Vision Walk (Help us fight retinal degenerative diseases!)" Topic


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286 hits since 9 Sep 2014
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skrivanek09 Sep 2014 10:41 a.m. PST

A charity and a story, for those of you who are interested.

My son, Henry (1-year-old) is blind and this charity supports research into treatments for conditions such as his. I hope one day, if the treatment is available and he chooses to receive it, we'll have another life-long minis gamer join our community. Thanks for looking!


The link, first of all: link

The story (it's on the site, too, but posted here in case you don't want to click through):


Let's cure blindness together! Please join our VisionWalk team 'Henry Strikes Back' or make a donation to the Foundation Fighting Blindness and help us save and restore sight to the 10 million Americans living in darkness.

We are walking to support the research around Henry's retinal disease, Leber's Congenital Amaurosis (LCA). We hope that you will support our team by making a donation and joining us at VisionWalk! Support our team and help bring us closer to a cure because a Cure is in Sight!

When Henry was two-months-old, we took him for his Well-Baby appointment. The pediatrician noticed he wasn't focusing on any particular points of interest and had severe nystagmus (eyes moving rapidly side-to-side). She said we needed to go see a pediatric ophthalmologist and provided a referral.

Henry went to the doctor that week and she believed he needed to be seen by a specialist at Johns Hopkins to rule out any of the more life-threatening issues which could have been causing his lack of vision. She began the coordination efforts and we got into Hopkins within a week!

We met with Dr. Repka at Hopkins and he immediately put us at ease as he did not believe Henry's issues were the result of a brain tumor. This was great news! However, he said we really had to wait and see how things developed since Henry was so young his vision loss could just be the result of a delay in his development.

The waiting game began.

An ERG (electroretinogram) was performed to test the functioning of the rods and cones in his eye and came back flat. Henry was nine-months-old and the most-likely diagnosis became LCA.

The only true way to confirm the diagnosis is with genetic testing for which we are awaiting the results.

The good news is research indicates LCA can be treated with gene therapy. There's one treatment completing Phase III trials now which has been shown to restore vision in patients who have a defect in that gene (RPE-65). Treatments for other genes are in the planning stages or early clinical trials.

Walks such as the Montgomery County Vision walk help fund research into effective treatments for these types of retinal-degenerative diseases. Many pharmaceutical companies have little-to-no interest in this research as the affected population is too small for them to make a profit on the treatments. This means we must fund the researchers at locations such as Children's Hospital in Philadelphia and Massachusetts Eye and Ear in Boston through traditional fund-raising methods.

We know that in time, with your help and support, we will be successful in developing treatments for these diseases and give blind people the option to see again!


Thank you from all of Henry's family and all of those who are affected!

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