Page 1 of 2 12 LastLast
Results 1 to 20 of 21
  1. #1
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0

    Exclamation Rett Syndrome - Please Vote

    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. #2
    Registered User
    Join Date
    Oct 2005
    Posts
    618
    vCash
    500
    Rep Power
    0
    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. #3
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #4
    engaged to dupa
    Join Date
    Jun 2002
    Location
    Heaven for climate, Hell for company.
    Posts
    18,917
    vCash
    500
    Rep Power
    1084
    (((Fozzie Bear's niece))) (((Fozzie and family)))

    Grave illnesses hit all families hard but when it's a child...
    3539 and counting.

    Slightly Wounding Banana list cont: MacMadame.

  5. #5
    Registered User
    Join Date
    Apr 2001
    Location
    Rejecting your reality and substituting my own
    Age
    30
    Posts
    11,005
    vCash
    500
    Rep Power
    0
    ((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. #6
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #7
    Just me
    Join Date
    Nov 2002
    Location
    no place special
    Posts
    6,762
    vCash
    9350
    Rep Power
    1820
    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.
    If this is to end in fire
    Then we will all burn together

  8. #8
    Port de bras!!!
    Join Date
    Mar 2002
    Location
    Ravenclaw
    Posts
    30,123
    vCash
    500
    Rep Power
    34026
    Hoping for the best for you and your family.
    "Nature is a damp, inconvenient sort of place where birds and animals wander about uncooked."

    from Speedy Death

  9. #9

    Join Date
    Feb 2002
    Location
    USA
    Posts
    244
    vCash
    500
    Rep Power
    14
    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. #10
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #11
    Registered User
    Join Date
    Apr 2001
    Location
    Rejecting your reality and substituting my own
    Age
    30
    Posts
    11,005
    vCash
    500
    Rep Power
    0
    Quote Originally Posted by Fozzie Bear View Post
    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.
    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. ) 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. 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. #12
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    Quote Originally Posted by Anita18
    Everybody has to fight for grant money.
    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. #13
    aka IceSkate98
    Join Date
    Feb 2007
    Location
    Somewhere in the Twilight Zone
    Posts
    6,998
    vCash
    12630
    Rep Power
    91805
    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.
    Angie
    “I have not failed. I’ve just found 10,000 ways that won’t work.” ~ Thomas A. Edison

  14. #14
    Registered User
    Join Date
    Nov 2002
    Posts
    766
    vCash
    500
    Rep Power
    0
    Quote Originally Posted by Simone411 View Post
    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.
    I'm having the same problem!

  15. #15
    aka IceSkate98
    Join Date
    Feb 2007
    Location
    Somewhere in the Twilight Zone
    Posts
    6,998
    vCash
    12630
    Rep Power
    91805
    Quote Originally Posted by zhenya271 View Post
    I'm having the same problem!
    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.
    Angie
    “I have not failed. I’ve just found 10,000 ways that won’t work.” ~ Thomas A. Edison

  16. #16
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #17
    aka IceSkate98
    Join Date
    Feb 2007
    Location
    Somewhere in the Twilight Zone
    Posts
    6,998
    vCash
    12630
    Rep Power
    91805
    Thanks, ((((Fozzie Bear)))). I hope the International Rett Syndrome Foundation wins the grant.
    Angie
    “I have not failed. I’ve just found 10,000 ways that won’t work.” ~ Thomas A. Edison

  18. #18
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #19
    Registered User
    Join Date
    Oct 2004
    Posts
    1,264
    vCash
    500
    Rep Power
    0
    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. #20
    aka IceSkate98
    Join Date
    Feb 2007
    Location
    Somewhere in the Twilight Zone
    Posts
    6,998
    vCash
    12630
    Rep Power
    91805
    Quote Originally Posted by Fozzie Bear View Post
    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!
    Thank you! The link worked for me. Hope you have a great weekend, too!
    Angie
    “I have not failed. I’ve just found 10,000 ways that won’t work.” ~ Thomas A. Edison

Page 1 of 2 12 LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •