New TV show - discovery channel - looking for patients with Hughes Syndrome

Having had communication with Optomen TV, apparently they are beginning to work on a new programme to be hosted on Discovery TLC Channel. Their remit is to explore different medical conditions and how people live with them, this will also include treatments being used. They are interested in looking at more unusual conditions, so us lot may well fit that criteria. The contact address to fill out a form is: I have of course sent them some articles in reply and the website of our charity to look at.

MaryF x

22 Replies

  • Well done Mary.

    Dave xx

  • When it came in I replied with to them with the Youtube film of Professor Hughes and a couple of well written newspaper articles, so that they got the whole picture! So they were looking at those before I loaded it on! MaryF x

  • Thats great Mary

  • Well done for flying the flag Mary. :)

  • What day and time will this air?

  • I have no detail, other than they are looking for patients with more unusual conditions, it may come to nothing! MaryF x

  • well done,lets hope the interest will come our way x

  • Thanks Mary

  • Even here in Stockholm I think you are something special Mary.Good luck!!!


  • Same to you, one country to another! MaryF xx

  • Wow, that would be great for awareness :)

    Would love to give it a shot.......but I'm shy!! ;)

    Will keep an eye out for it for sure , thank you Mary x

  • Hi Mary not sure if you needed other people with Hughes syndrome to complete the form.if so the email address didn't work for me.

    Thank you for all you do

  • Hi there, that is the only email address I had which worked when I did it... not sure why it would stop now! Maybe they have been inundated! MaryF x

  • The email address worked for me today if you would like to retry:

    I sent them an email and in return they sent a 2 page form to complete

  • Ok thanks, I expect they have.

  • Hope it will air in the US. We need to have more awareness, everywhere. Wonderful job Mary.

  • Thank you Mary, I filled in my application form today... xx

  • I have sent an email today so awaiting application form thank you

  • Did anything ever come from this?

  • No idea I am afraid. MaryF

  • Thank you for your effort

  • First class MaryF.

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