Misty
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Misty's Journal

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  • October 08, 2008

    I need video file please

    Please email me any video files that I can use to make a video on HD please. Please send files not links to youtube. Thank you.

    Misty

  • August 27, 2008

    Need Photos Please!

    Hello Everyone:

    I am meeting with Congressman Darryl Issa's office on September 2nd. This is our second meeting with him. I was wondering if you would be willing to share with me some before and after photos of those you know that have been affected by Huntington's Disease. I am bringing some of my mother. I need to show that this disease effects people! I hope that makes sense! If you wouldn't mind sending them to my email at roto1@cox.net. I will only use the photos for this meeting. I will not post them or share them with others,

    Thanks,
    Misty

  • July 15, 2008

    Great News! H.R 6259

    Today after speaking with Congressmen Brian Bilbray's office, he has signed on to be a co-sponsor for H.R. 6259!

    Thanks to all those that have written and if you have not written,emailed or called your congressmen asking him or her to co-sponsor this bill. Please do!
    Congress will be taking a break in August!

    Misty

  • July 10, 2008

    Please, Please, Please Write Today!!

    Hello Everyone,

    This is just an update and a plea for your help!

    Congressman Bob Filner introduced H.R. 6259 on June 12th. As of today we have no co-sponsors! There are 434 other Representatives in the house who we should look to as potential co-sponsors for this bill. The more support each one of us can rally from our local congress member brings us one step closer to seeing this legislation passed.

    Contact your Representative today! You can visit www.house.gov to find your local representative and their contact information. I have  included a sample letter below. You can also schedule a home office visit with your local Rep to speak in person about how much this legislation would mean to the HD community. But most importantly please write and ask everyone you know to write. It took me all of 5 minutes to write my Congressman using the sample letter below! The squeeky wheel gets the grease, and we are not even making a peep!

     

    SAMPLE LETTER: 

     "I am writing to urge you to support H.R. 6259, a bill that would improve the lives of more than 30,000 Americans with Huntington's Disease.  


    Huntington's Disease is a fatal neurological condition that affects my family.  For many people with HD, obtaining Social Security disability and Medicare benefits is a major struggle. [Please add 2-3 sentences describing your personal experience with HD].


    The Huntington's Disease Society of America is seeking congressional support for legislation to address this problem.  As my Representative in Congress, I urge you to co-sponsor this bill and help fight for its enactment into law.


    Thank you and I look forward to your response."


    Please let me know if you have any questions!!

    Misty Oto