Rett Syndrome - Please Vote

Discussion in 'Off The Beaten Track' started by Fozzie Bear, Aug 31, 2010.

  1. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    I've had a very hard time concentrating on anything the last few days. Found out that my niece has Rett Syndrome. We've feared for some time that she hasn't been developing normally, but the reality still has been jarring. Sometimes I get so damn angry because it seems so unfair that this sweet, beautiful child, who has barely begun her life, essentially may be a prisoner in her own body.

    I've been trying to be proactive. Looking up as much information as I can. Trying to see some hope in the recent research on Retts. The International Rett Syndrome Foundation is trying to win a grant to expand on some promising research. If any of you have a few minutes to spare, could you send a vote that way? Much thanks.

    http://www.refresheverything.com/rettresearchtoreality
     
  2. Bailey_

    Bailey_ Guest

    Fozzie Bear - I just wanted to say how sorry I am to hear about the diagnosis your niece has been given. I have a beautiful niece who I love very much and I can only imagine the pain that you and your family are feeling. I have also worked with girls who have Rett Syndrome and their families and it is a very difficult road to walk. It is ok to be angry - denial, anger, sadness are all a part of the process of coming to terms with any difficult diagnosis. Bless you for being proactive, it will be helpful in making sense out of something that seems so senseless most of the time. I just want you to know that you are in my thoughts and I wish the best for you and your family.
     
  3. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    Thanks, Bailey. Since childhood, I've been trained with the "men don't cry" mentality, but I think I've broken down more times this week than I have in the last fifteen years. Good thing I have my own office at work. I helped raised my niece the first 15 months of her life; in some ways I've felt like parent number 3.
     
  4. milanessa

    milanessa engaged to dupa

    Joined:
    Jun 8, 2002
    Messages:
    18,917
    (((Fozzie Bear's niece))) (((Fozzie and family)))

    Grave illnesses hit all families hard but when it's a child...:(
     
  5. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,164
    ((HUGS))

    It's great that she's surrounded by such caring people. Things will be all right as long as you have that, despite the illness.
     
  6. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    Thanks, everyone for your support.

    In 2007, scientists were able to reverse Rett Syndrome-like symptoms in mice. Hopefully research will progress to find a cure for my niece and all these little girls and families who are devastated by this illness. Please do vote when you get a chance: http://www.refresheverything.com/rettresearchtoreality The proposal needs to be in the top two to win the grant.
     
  7. Nan

    Nan Just me

    Joined:
    Nov 27, 2002
    Messages:
    6,780
    A co-worker has an 18-year-old step-daughter with Rett Syndrome. She is a beautiful, sweet girl. I'll pass this on to her.
     
  8. IceAlisa

    IceAlisa Épaulement!!!

    Joined:
    Mar 24, 2002
    Messages:
    30,660
    Hoping for the best for you and your family.
     
  9. Ania

    Ania Active Member

    Joined:
    Feb 20, 2002
    Messages:
    245
    I am so sorry this happened to your family. I just voted for IRSF proposal.
    I will keep your niece, her parents, and you in my thoughts.
     
  10. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    Thank you all for your kind words. Thanks Ania and Nan for spreading the word and voting.

    I hate that all these charities have to fight for grant money. So many deserve it, and need it. But I guess it is what it is.
     
  11. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,164
    Everybody has to fight for grant money. (My boss is currently writing this year's grant proposal. He's been working on it for two months now. :lol: ) Even when a charity gets grant money, they can only give it to the chosen labs for a limited amount of time. Research is expensive and money is hard to come by.

    I work in a cancer research lab and most of our money comes from the NIH, i.e. the government i.e. your tax dollars. :p I'm pretty sure all of the money going to cancer research through charities only pays for lab startup costs for the first couple of years, if that. Otherwise it's back to the grind writing grant proposals to beg money from the government...
     
  12. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    I know. I was reacting to the voting frustration. I feel guilty looking at the Pepsi site and thinking "Damn it! They're ahead of us." It's not a good feeling being pissed off at a charity that's trying to cure Juvenile Myositis.
     
  13. Simone411

    Simone411 aka IceSkate98

    Joined:
    Feb 28, 2007
    Messages:
    7,366
    Fozzie Bear, I've tried to vote twice but my browser keeps freezing up on that site. I'm using IE 8 and not sure what the problem is.
     
  14. zhenya271

    zhenya271 Active Member

    Joined:
    Nov 7, 2002
    Messages:
    767
    I'm having the same problem!:(
     
  15. Simone411

    Simone411 aka IceSkate98

    Joined:
    Feb 28, 2007
    Messages:
    7,366
    It's weird because it takes about a couple of minutes to clear up. It freezes again if you try to move the mouse around. I hope the problem clears up soon. :(
     
  16. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    Sorry I missed your posts! I've been using googlechrome. It was stuck sometimes, but I kept refreshing.

    You can also text 100571 to 73774.

    ETA: I think voting's closed now, at least on the east coast. Thanks everyone!
     
  17. Simone411

    Simone411 aka IceSkate98

    Joined:
    Feb 28, 2007
    Messages:
    7,366
    Thanks, ((((Fozzie Bear)))). I hope the International Rett Syndrome Foundation wins the grant.
     
  18. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    We didn't win. I thought we had it, because we were in 2nd place when their closed the poll. But in the morning we had dropped to 3rd. I started voting in late August, but those who've been supporting the proposal for a while say it's been close to winning the grant three months in the row. Damn it.

    But there's still September, and I have twenty email accounts to use. Please do continue voting if you can. Rett research has been so promising since they've been able to reverse the symptoms in mice. It would be great to get a boost in funding to further clinical trials. Success in curing Retts could benefit others with autism spectrum disorders as well.
     
  19. Fozzie Bear

    Fozzie Bear Well-Known Member

    Joined:
    Oct 19, 2004
    Messages:
    1,265
    Sorry to keep bumping this up. I know a lot of people had trouble with the voting page, so I thought I'd post this: http://www.refresheverything.com/search/?q=rett. This works better than the main page because it doesn't have the 7000+ comments that slow everything down.

    Thanks, and hope everyone's having a great weekend!
     
  20. Simone411

    Simone411 aka IceSkate98

    Joined:
    Feb 28, 2007
    Messages:
    7,366
    Thank you! The link worked for me. Hope you have a great weekend, too! :D
     
  21. skatesindreams

    skatesindreams Well-Known Member

    Joined:
    Sep 30, 2002
    Messages:
    14,119
    I'm so sorry that you and your family are dealing with this.
    My thoughts and support will continue to be with you.