EJ Scott was diagnosed with CHM (Choroideremia) in 2003 along with his younger brother, while his sister was diagnosed as a carrier.  Her eldest son, Liam, tested positive in 2005 and Aiden, the youngest has yet to be tested.  We hope for the best when he is.

Since 2003 when he had 70 degrees of sight per eye, his vision has degenerated to less than 15 degrees today, which qualifies him as legally blind. He no longer drives and now he walks with a red and white cane.

After a year of being in denial, he decided to try to help raise money and awareness for the cause. He has put together numerous benefits and he has documented his brother-in-law, Liam’s father, as he remarkably rode a bicycle across the country for the cause.  EJ hopes to complete the film soon.

He has also raised a great deal of money when he was sponsored to lose weight for his first marathon in 2010. He then completed two halves in training and the full all in Chicago.  He was highlighted in some local news and realized what an amazing opportunity this was to help out the foundation.

Coming soon, more information about EJ.


  1. EJ, you’re so freaking brave man. I admire you so much and am so happy that you have the support of your family and friends, including your beautiful girlfriend Deborah who I am a fan of and has directed me to your website. I wish you the best and you have my support as well.

  2. i am a woman, 50 years of age. e.j you such a wonderful guy and im sorry of your situation, may the Lord Almighty bless you and your family who takes care of you. GOD makes miracles, try to watch (emmanueltv) on youtube. Please try!

  3. I am in awe of what you are doing! I myself am pretty miopic (-9 and -8,5 in contacts, about -10 in glasses), but I realise that I am very lucky – because I can still see. I can’t run to save my life (unless I’m sweeping a curlingstone – but then that’s more sliding than running), and I think Marathons are madness. But I admire the crazy, wonderful people, who decide to run one (or more, as the case may be), because I know the level of commitment it takes. So, ‘in awe’ is probably the best way to describe the way I view you (no pun intended), and I’ll be cheering you on from Denmark.

  4. I started watching daredevil the other day, found out about Deborah Ann Woll, searched about her previous work, and found out about you and now I am your fan after reading what a brave dude you are.

    Much love and respect.

  5. I was watching Daredevil and came across your name. I was interested, since my son has ONH and I have been trying so hard to get him to start running, since I run marathons. His disability is starting to cause hip problems, so we were hoping running would help. I look forward to reading more about you in the future.

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