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A film about life with ME, the world's most prevalent orphan disease.
A film about life with ME, the world's most prevalent orphan disease.
2,593 backers pledged $212,962 to help bring this project to life.
Kirsty Strain, Jenny Sherman, and 29 more people like this update.

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    1. Missing avatar

      Allison Haynes May on

      Hi Jen - Thanks for the update and for The#MEActionNetwork, a new way to "show our numbers". Another step away from being ignored !
      I'm glad you made it to your reunion; I've been to a few myself, just because it's so good for the soul to see the people who knew you when you were healthy and active (i.e. the real you). So very sorry that it had to cost you so much though. I hope you are getting lots of rest and sleep, and that you will soon be feeling much better than you are in that painful photo.
      Thanks for your bravery in documenting the good & the bad. I'm sure I'm not the only one who has wished to be able to document these things, but been unable to.
      Thank-you, thank-you, thank-you. <3 And take good care of yourself. oxo

      Allison,
      Ottawa, Canada.

    2. Missing avatar

      Janis Hayward on

      Grateful for all your work, Jen! Looking forward to the film and keeping in touch with progress on other fronts. God bless you and give you strength today...
      Jan

    3. Pamela on

      Hi, Jen! Hope you are feeling better. I'd like to propose something for MEAction. Something I have been starved for after 25+ years with this illness is human contact with a fellow sufferer. I have never met anyone with this disease and, meeting someone - to me - would feel like two aliens from the same planet coming together on Earth and finally
      being able to speak and understand each other. Not knowing what your specific plans are, it would be great if you could create a master open database of sufferers. Patients could volunteer a variety of information which could include a field for where they reside and if they want to be contacted. So, for example, I could search by field and find all the fellow sufferers in New England who want to connect. This could also work for organizing local actions/events. On another note, my husband is a Web Developer specializing in UX (User Experience) so let me know if you need any help with the site down the road.
      All the best, Jen!
      Pam Ardizzone

    4. Eddy Keuninckx on

      Great job Jen! We'll support you whenever we can.

    5. Gloria Council on

      I am so sorry!! After 8 years, I still get so messed up when I really want to do something that means a lot to me. It is almost like it is somehow not allowed. To keep going forward anyway is hard. I so respect you for it and wish you well, but please take care.
      My son makes documentaries and he just finished one and I was so excited to see it.
      I made it because it came to my city but was so worn out after. Someone else had to take me there of course. He puts his whole heart and soul in his films and it takes such a toll on him and he is in good health. I just want you to know that you are in my heart and prayers. I can only imagine what kind of walls you could knock down if you were well! Take care of yourself first always. Gloria. (Thanks for your reply by the way)

    6. Jennifer Brea 2-time creator on

      Hi Gloria – yes and no. I'm doing better in some ways than I have been in a year, and so I am able to do much more, but in the case of the photos above, severely underestimated my sensitivity to noise, stimulation, and motion.

    7. Gloria Council on

      Jen, are you o.k?

    8. Jenny Sherman on

      I love you keep going! xoxoxo