I recently visited Dallas, Texas. I was there to support my hometown Wisconsin Badgers who were in the Final Four. We left empty handed, but it was a great experience. I also had the chance to sit down and chat with a couple of great people from the Foundation Fighting Blindness. Jenny Lynn and Maria Cartagena work at the southwest chapter for the foundation.
I asked, “What is the Foundation Fighting Blindness“:
Lynn stated, “Basically, the Foundation Fighting Blindness is an organization that exists to find treatments and cures for retinal degenerative diseases. That’s the blanket answer, but I think if you talked to our members, you would get a lot of different answers. Some of them [would say] the Foundation Fighting Blindness is my family… where I get support… where I met the doctor who finally clicked with me who knows what is going on with me. It’s a fun way to get involved, raise money and give back to a cause. There’s a lot of ways to answer that question.”
Maria is a great story. She was diagnosed with retinitis pigmentosa a couple of years ago. She is at a point where she can drive during the day and “secretly at night”. She bumps into things and constantly has a new bruise on her legs. Immediately upon diagnosis, she started researching and came across the Foundation Fighting Blindness. She began volunteering with the local chapter in Tampa, Florida. With a desire to be more involved and “see everything firsthand” she interviewed and took a job with the foundation. Eight months after her diagnosis she moved 1,100 miles to Plano, Texas to work for the largest retinal research organization in the country.
I asked them about challenges specific to people in the Dallas/Forth Worth area. One of the big challenges for those with vision issues in the area is how spread out it is. When they can’t drive they rely heavily on public transportation. The DART (Dallas Area Rapid Transit) system does not offer an easy connection to the various communities in the area. Google recently gave an update to their self-driving car. For those that can’t drive, this can’t come soon enough.
They also shared with me the latest news about the Argus II, which was recently approved by the FDA. It is a chip that is implanted on the retina. It then communicates to special glasses that the person wears. It is able to restore some visual function for people that are completely blind, which is a huge improvement.
I asked about misconceptions that people with vision issues deal with. Maria falls down and people think she is clumsy and/or impaired. She brought up a great point about how others have a hard time understanding those with vision issues: “It’s really hard for them to relate or understand when they can’t see it. If someone has a missing arm, they would probably be a little bit more sensitive versus they can’t see what you see, so they can’t relate.” Another common occurrence is when “someone goes to shake someone’s hand and their hand is below where their sight line is and they can’t see it”. This leads to people thinking they are being rude.
A highlight from the conversation was learning about a gentlemen with very little sight who has a yearly Oscar party. He loves movies. He and his wife still watch movies together. He, of course, focuses on listening to them.
For my final question I asked, “If you knew you were going to lose all of your sight, where would you go in the world? What do you want to see?” Lauren settled on going to Patagonia. Maria said “if I knew I was going blind in a month, I would think I would want to see myself in a wedding dress, what I would look like if I were to get married.”
During the conversation, we came to the realization that we all love to dance. They invited me to their dance class a few days later. Unfortunately I was not able to make it. However, I will see them soon in Colorado for the VISIONS2014 conference and dancing will be involved!
To see the transcription of the full conversation go here.