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Deborah Ann Woll seeks awareness and funding to fight Choroideremia

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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.

 

 
source: visionandhearingnews.com

 
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Additional Ways to help fight Choroideremia via Amazon Smile

Published on April 4, 2014 by in Fundraising

amazonsmilelogoAmazon.com has a new charity program called Amazon Smile that allows you to help fight Choroideremia. When you shop on Amazon.com, if you have designated the CRF as your charity in Amazon Smile, a portion of your purchase will be donated to the CRF!

Here’s how it works:

Go to http://smile.amazon.com and sign into your Amazon account. Once signed in, a page will appear explaining the program. On that page you will find a Search box to search for the charity you wish to support. Type in “Choroideremia Research Foundation,” then click Search and you will see the CRF listed. Click on the CRF listing and you’re ready to go! The next page will look just like the normal Amazon site, except now you’ll be shopping and supporting the CRF at the same time!

Below is an illustration of how to do it (click on the image to see it larger):

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You will only have to search for the CRF the first time. From that point on, the CRF will be linked to your account. Just remember to bookmark http://smile.amazon.com and use that URL for your Amazon shopping from this point on. The CRF will receive .5% of all eligible purchases!

Please share this information with all your contacts and encourage them to use Amazon Smile to support the CRF. The more people who use it, the more funds we can raise!

source: choroideremia.org

 
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EJ Podcast #021 with Darren Lynn Bousman

Published on March 27, 2014 by in EJ Podcast

Below is another  EJ Scott Podcast, “Scratch the Surface” #021. EJ has as his guest today the writer/director, Darren Lynn Bousman, who has is best known for his horror films, such as the “Saw” series.

EJ says:

  • Darren Lynn Bousman opens up about his frustrations with the movie business,
  • his insecurities about his talent (or lack there of according to him),
  • being overweight,
  • being raised in Kansas,
  • how his parents gave him freedom to watch whatever he wnated which lead to a love of horror movies,
  • how his mother was blind when he was born and the numerous eye surgeries he has had,
  • his love of musicals,
  • plays me a singing voice mail message from Paul Sorvino, Repo the Genetic Rock Opera,
  • the real story behind Scream Queens,
  • getting fired on the X-Files,
  • directing SAW 2, 3 and 4,
  • how he manipulated a company and buzz for a script he wrote so other people would gain interest,
  • working with my girlfriend Deborah Ann Woll,
  • his new film Abattoir,
  • working with the late Cory Monteith,
  • killing people in flash mobs,
  • working with Stephen Moyer on the Barrens,
  • working with Nina Dobrev, Anthony Head, Michael Rooker and so much more!!

Give a listen, give a share, and ENJOY!!

Please share with your friends on social media or any other way. Listen to EJ’s other podcasts because those are pretty amazing also.

darrenlynnbousman2

 
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EJ Podcast #020 with Marshall Allman

Published on March 27, 2014 by in EJ Podcast

Below is another “Scratch the Surface” EJ Podcast.

EJ has as his guest today Marshall Allman who is known for his role as the shapeshifter, “Tommy” for two seasons on HBO’s True Blood. He has also been seen in other TV and films, and has a very impressive resume for any age, but especially for a 29 year old.

EJ says they talked about the following:

  • Marshall tells a great story about how he met his wife, actress Jamie Anne Allman (from the Killing and the Shield) by sneaking into a bar at age 18 and kissing her while she still had a boyfriend and how a year and a half later they went on their first date,
  • we talk about how a knee injury encouraged him to try acting, we talk about his soccer and art background,
  • working with Aaron Paul and talking with Aaron about not asking out Jamie,
  • how Camryn Manheim was his hero when he did an episode of the Practice,
  • working on Prison Break, Mad Men, Always Sunny in Philadelphia, Men of a Certain Age, Malcolm in the Middle,
  • jokes he palyed on Joe Manganiello during filming of True Blood,
  • how he felt being killed off the show,
  • how awesome Robert Patrick is,
  • working with Billy Bob Thornton, Sons of Anarchy, Justified and Filthy Sexy Teens and more!!!

Please listen, share and enjoy. Had a lot of fun talking with Marshall.

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EJ Podcast #019 with Steve Agee

Published on March 27, 2014 by in EJ Podcast

Below is another “Scratch the Surface” EJ Podcast. EJ has as his guest today Steve Agee who is probably most recognizable from the Sarah Silverman Show that was on Comedy Central for three seasons. 

EJ says:

I know Steve from his improv comedy background and in this episode we talk about

  • how his dad murdered his pet guinnea pig with a shovel as a child,
  • getting so drunk and rowdy in high school he got kicked out of several until he was sent to military school where he started smoking meth,
  • how vertigo and anxiety really screws up his life,
  • meeting Sarah Silverman and having a crush on her,
  • how her friendship with Sarah lead to a job on the Jimmy Kimmel show,
  • how doing a small bit on the movie Super got him a new best friend in Ellen Page,
  • we talk about Jeff Garlin, Gina Gershon, Community, New Girl, Kevin Bacon,
  • how he foolishly promised to read every one of his twitter followers names when he first joined if he got to 5,000 followers and how that number jumped to closer to 8,000, he spent 8 hours on video reading twitter follower names,
  • a surprise appearance by my girlfriend Deboirah Ann Woll and so much more!

Please share with your friends on social media or any other way. Listen to EJ’s other podcasts because those are pretty amazing also.

Listen and Enjoy.

steveagee

 
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