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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.
Ron Figueroa, Tom Brown, and 28 more people like this update.

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    1. Missing avatar

      ronald coughlin on

      Thank You Jen and Kiren for fighting for an awareness of all of us invisible sufferers . I am cautiously looking forward to some changes in how we are treated before too many more end their lives . I have suffered immensely with this disease for 22 years now and bedridden for last 5 years .Ive been laughed at , called a liar , had myself and my family told I was fine and just wanted pain pills . It is bad enough to hear this from others but my family believes the Doctors. I mean after all don't the Docs know everything about health issues ???? Thankfully I did find a pain management clinic that is helping me at the moment but every visit they tell me that they cant just keep giving me pain pills . The day they stop will be the last day of my life for I will never again suffer like I have waiting for something to change . Hopefully you have started something that will save others that come behind us . My wife has called me lazy and worse . I could go on and on with these type of examples but I get very emotional the more I really think about all that has happened since this vile disease attacked me . I donated to your project out of the very limited funds we have and caught hell from wife for doing so lol . But that's ok you have given me the first good news and thoughts ive had in a very long time . Thank you for bearing our cross that so many of us are too weak to carry . Thanks again for everything :)

    2. Gloria Council on

      When you ask what we hope for. That's a hard one because it's hard to remember sometimes what it feels like to feel good. I would hope for walking without getting too tired and maybe being able to go visit my son who lives across the country. It has been a long time since I was able to travel. I have had a really good life up until I got this illness so I feel pretty good about that, so what I really hope for is that a cure could be found for young people who have been afflicted so they can get their lives back. I know that they would never take good health for granted if they could just recover and feel what it is like to be able to jump and run and dance and just celebrate every day they wake up with energy and a big smile. I also know they would have a remarkable compassion for others because of having lived through this thing.

    3. Julio B. Soler on

      Congratulations, Jen and Kiran. This is amazing and very exciting!
      Well done! :-)

    4. Missing avatar

      Yair Oren on

      This is HUGE to all of us suffering this horrible, debilitating illness! It is bad enough to have been suffering for over 20 years now, isolated, invisible and just barely surviving but the stigma
      and ignorance around this illness adds INSULT to injury! Our government is leaving us helpless and without educated doctors in medical school, insurance and medication. It is bad enough that we are unable to work but we must pay out of pocket for our care if we are lucky enough to have the funds. It is a crime that other patients are dying and committing suicide in this country!
      This is not a third world country! Thank you so much for this effort...it gives me hope!
      I want this to be only the beginning of our journey because if we do not fight on we will not get
      Support, Recognition, Insurance, Educated Doctors, Funding for Research, a Cause, a Cure or
      our Dignity back! Unfortunately we have to do this from our sick beds...we MUST!
      Thanks for starting this for ALL of us!
      I contributed to this as did my husband, Yair Oren, the reason I am still here and hoping! I am blessed to have his support and know many others are not as fortunate. I want this for everyone out there and will do my best to help make it happen!
      Wow...this is Fantastic!!!!!!
      xoxo
      Frieda Oren

    5. Missing avatar

      Lisa Holmes on

      Thank you for having the courage and energy to make this documentary. People will finally know about our illness. I wish you the best of health as you embark on this tremendous project. If you ever shoot in Toronto, or looking for more people to tell their stories, I would love to be of help. Best wishes, and peace and love to all of you struggling with M.E.

    6. Lisa Catherwood on

      I have had ME for 38 years. It is the most awful of illnesses. I cried when I saw your kickstarter video because I have had both belief and disbelief from the medical profession and people around me, I totally get where you are coming from. Education about this illness is something which can truly improve the lives of sufferers. Good for you for finding a way of doing something real and many congratulations on achieving your funding target :-)xx