Media Planet recently put together a special pull-out section for USA Today titled “Vision & Hearing News”. Part of this special pull-out featured an interview with EJ’s girlfriend and actress Deborah Ann Woll, one of the stars of HBO’s “True Blood”. Deborah talked about her relationship with EJ Scott and their efforts to bring awareness and funding to the Choroideremia Research Foundation.
Here’s the interview:
Mediaplanet: What is the most difficult part about Choroideremia (CHM) for you and EJ?
Deborah Ann Woll: I often feel very helpless. While we can fundraise, try to talk about the disease and help people cope with it, we can’t actually control the trials or their outcome. It’s up to science and nature to decide whether EJ and the other sufferers of this disease will retain their sight. That’s hard for me as an observer to deal with and I imagine even more difficult for those with the condition. I know EJ struggles, especially watching his family go through it. We want to give them their sight back so badly, but there is nothing we can do but hope our fundraising gives the doctors what they need.
MP: How do you cope with this struggle on a daily basis?
DAW: I wouldn’t say we struggle with it daily, but it is present on a daily basis. Logistically, living in sunny LA is difficult for EJ, who is very light sensitive, and we have to be extra vigilant about organization so that he doesn’t lose things or trip over anything. But mostly I think you love each other, have patience and try to understand things from the other persons perspective. It’s not too different from any other challenge in a relationship.
MP: What advice do you have for readers affected by vision disorders or impairments?
DAW: Again, I’d say patience and communication. Both from those directly affected by the disease, and indirectly like myself. Let others know what your experience is so that they can understand and help instead of feeling frustrated and alone. For example, in my experience, things take a little longer when traveling with a person who is visually impaired. I used to get frustrated and nervous about getting where we needed to be and started to feel like a chaperone instead of a partner. I finally expressed my worries and we agreed that neither of us wanted to feel like a burden, so now we leave more time, get access to the handicap TSA line and pre-board the plane so that he has as much time as necessary to settle in. This way, he is in charge of himself and I’m not worried that we are holding people up or are going to miss our flight. We will probably be tweaking things like this forever—and that’s a good thing.
EJ would extend that even broader and advise that anybody who has any vision impairment should speak up and not be ashamed to tell their story. So many people ignore blindness and there is no reason to hide it. He welcomes questions about his condition. Sharing can only bring about better understanding.
MP: How can readers get involved in raising awareness for CHM?
DAW: Anything helps. Even a simple retweet can go a long way. Most of our fundraising comes in lots of small doses from generous people just like you and me. This year the Choroideremia Research Foundation is campaigning to raise $1 million in 2014. Previously the most raised in a year was half that. Our main goal is to motivate as many people as possible to take action—mow lawns, bake cookies, have a yard sale. EJ and I have been auctioning off tons of our own things on eBay with the proceeds going to the CRF. It’s been great to recycle the things we don’t use anymore and raise some money at the same time. The point is you can’t go wrong if you try.
Please help us raise awareness of the cause by sharing this information and thank you for your support! You can also donate directly and safely to the Choroideremia Research Foundation by credit card or Paypal using the PayPal button here below. Donations are tax deductible for US residents.