Last week Wednesday, on October 8th, 2008, President Bush signed into law Senate Bill 1382, The ALS Registry Act, which will create the first ever national patient registry of people with Lou Gehrig’s Disease (ALS).  The registry will compile information to help decipher the cause, appropriate treatment, and finally the cure for this horrible disease.
This was a bill that Nick was very passionate about; he posted about this Act on the blog more than once and encouraged us all to write our Congress members to ask for their support in getting this passed.   After almost 4 years of advocates lobbying for this bill, it was signed into law late on the afternoon of October 8th.  That day may ring a bell for some of you, as that same day, Nick would have turned 29 years old.
Although it is sad that Nick was not here to see the Act that he fought for finally make it into law, it is a tribute that it happened on his birthday.

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13 Comments





  1. Karen Says:

    Amen, Ann. It was indeed a tribute to Nicholas. Everyone that I told about the act passing on Nick’s birthday felt that it wasn’t just coincidence! Thanks for letting the world know.
    Love, Karen

  2. Del Gran Says:

    Should have been named the NickAnn Bill. I have faith that Nick was the first to know.

  3. Art & Marlys Says:

    We believe that Nick is working from the other side. It is a great success for all of you and it was supposed to be on his 29th birthday. Thanks for posting it for us to see.

  4. Kurt Says:

    Yahoo!!

  5. Nicole Says:

    Awesome!!!! Thats the best news I heard in a long time!!
    Love you Ann
    Nicole :)

  6. Jofrid Says:

    A tribute to Nicholas and a tribute to you, Ann. I agree with Del Gran. Thinking a lot of you.

    Love,
    Jofrid :-)

  7. Cassie Says:

    How awesome!! As sad as it is that Nick was unable to see this happen, it’s great to see all of his hard work finally paid off. What an excellent birthday gift!

  8. Cathy Says:

    Absolutely amazing Ann. Thank you for posting that information. Isn’t it funny though that there are people who don’t believe in Angels? I believe that Nick definitely had a hand in making this happen and that he did know about it too. We love you so much! Love, Cathy & Mak

  9. Jen Thompson Says:

    I choose to believe that it is Nick himself that is making things happen!! He will be one of God’s most active angels. It is certainly no coincidence that this happened on Nick’s birthday. He is still looking out for others…we miss him so much! Thanks for making us all aware of this action Ann! It made my day! Think of you often, Jen

  10. jennifer Says:

    What lovely bittersweet serendipity! May this legislation be a step closer to finding the answers to defeat the ravages of ALS. Nick is still making a difference in so many of our lives–I, too, miss him terribly. thank you Ann for posting this–it was such a ray of sunshine to hear from you and to learn this good news. Hugs to you and Ylvi

  11. Julie Tiedeman Says:

    Nick was a testament to worth of the bill and passing of it on his birthday was acknowledgement that his own lobbying for it was successful. You remain in my prayers. Glory to God!

  12. Roberta Says:

    How fitting that the bill he had so diligently worked on was passed on his birthday. I agree with the others that this was no coincidence.

    May our Heavenly Father continue to sustain you and your family.

  13. Lori Says:

    Your wonderful Nick is not forgotten, his heart still speak to patients like me diagnosed after his going to Heaven.

    God bless you all

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