Foundation (Still) Fighting Blindness

by Maurie Hill on July 2, 2014

Maurie and Becca at the VISIONS awards gala

Maurie and Becca at the VISIONS awards gala

Becca and I recently returned from the foot of the Rocky Mountains no worse for wear after another rousing Foundation Fighting Blindness (FFB) VISIONS conference. Given that this was my seventh one in a row, I thought this would be the one in which I could control my emotions. Well, that idea went out the window when a parent of a child newly diagnosed with Stargardt Disease told me how our Zoomed In blog has educated and helped him deal with the news, making him realize that his daughter would be just fine. That alone made the trip worthwhile for me. Then the keynote speaker Tom Sullivan, made everyone laugh and cry with his stories of growing up blind in the 40’s and 50’s in his Irish Catholic neighborhood in Boston, where a very high fence was erected in his backyard for his safety.

But this didn’t protect him from a boy walking home from a Red Sox game, taunting him through the wired fence with “blindy . . . . blindy”. Later, some friendlier neighborhood boys inspired him to breach that well-intended fence when he heard them playing ball. Since then, both literally and figuratively, he has never stopped climbing fences. His presentation as well as most of the sessions will be available on the VISIONS 2014 website, but until then, I plan to read one of his many highly recommended books, Adventures in Darkness, which is also available as a downloadable audiobook on the NLS Bard website.

Maurie and Becca meet up with ZoomText user and guest blogger Janet Parmerter-DiNola and her husband Keith.

Maurie and Becca meet up with ZoomText user and guest blogger Janet Parmerter-DiNola and her husband Keith.

We also caught up with some longtime ZoomText users from far and wide so we can now match the face with the voice. And yes, Janet Parmerter-DiNola is as warm and funny in person as she is in the hilarious blogs she has written for us. She will never live down the Talking Crotch Watch story! In addition, we were lucky enough to have Tambor Haven along with her sister Dianne as our wonderful guides to Denver and the foothills. Tambor also led us through Colorado’s Vocational Rehabilitation facility, a place that she herself attended many years ago to learn the skills to cope independently after her vision degenerated.

We were pretty busy in the exhibit hall so I didn’t get a chance to attend many sessions, but Becca and I had the honor of presenting one of our own called “The Low Vision Toolkit”. Along with showing off all the Ai Squared products, I shared some of my own tips as well as gadgets or apps that I use all the time. After querying the audience whether they knew about NLS Bard, NFB-Newsline, Voice Dream, and Bookshare, I realized that there will always be people new to this game of low vision. They’re eager to learn about anything that will make their own life, or a loved one’s life, more efficient and fulfilling.

Picture of Maurie in the Ai Squared booth at VISIONS

Maurie working hard in the Ai Squared booth at VISIONS

I’m not sure there is a larger gathering of us with retinal degenerative diseases, which makes it a perfect venue for learning and information sharing. It was wonderful to see parents of children with Stargardt Disease exchanging email addresses. It can be enormously comforting to talk to someone that has walked or is currently walking in your footsteps. Having sessions on life skills as well as those reporting on the status of the latest clinical trial at the same conference is unique. While we leave the research to the experts associated with the FFB, we can help by spreading our knowledge, and helping with their fundraising efforts.

One of the highlights was the announcement of an extremely ambitious and generous gift-matching program provided by FFB’s own Gordon Gund, who lives with retinitis pigmentosa. He’s committed to seeing important research and clinical trials translate to treatment for eye diseases. It will be exciting to watch what milestones will develop in the next 10 years that build upon all the advances made in the last few decades. Mark your calendar for next year’s VISIONS conference, taking place from June 26th to June 28th, at the Baltimore Waterfront Marriott. Hopefully that will coincide with a Baltimore Orioles game at Camden Yards. You can’t beat their crab cakes, and you don’t have to climb the fence in order to have access to a good seat even if you’re low vision – Becca and I can attest to that from our 2011 VISIONS experience.

  • Irving J. Arons

    Bravo, Maurie.

  • Noyon Hossen

    Thanks for published it.
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  • http://www.localwebdesignlondon.co.uk/ Zoe Faulkner

    You seems enjoyed the conference.

  • Tom Coburn

    Ya we join the FFB vision walk every year. I Started out walking in the Ft Wayne Chapter walk representing the Indiana workers for the blind, but then just before I got married, I relocated to Indianapolis where she lived & continued walking for the Indianapolis chapter. Due to our work schedules we don’t have time to go around raising funds, but we do the vision walk

  • Dale B Biggs

    Thanks very much for this great article;this is the stuff that keeps me going through out these day.
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  • https://www.youtube.com/channel/UCQmj5S5VzK064HN5hB_YNhQ Jon

    “when a parent of a child newly diagnosed with Stargardt Disease told me
    how our Zoomed In blog has educated and helped him deal with the news,
    making him realize that his daughter would be just fine.” Well, i am a 42 year old “child”, and yes, this blog is helping me to “see” things are going to be better than i imagine. Many thanks again. So informative and POSITIVE.

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