Monday, November 18, 2013

let's make a difference for BBS kids!

Dear Family and Friends,

As many of you know, we recently had the opportunity to take Lucy to visit some wonderful doctors at Marshfield Clinic in Wisconsin (HERE).  

We came home armed with information and important updates for Lucy’s health.  But even the most informed doctors can only help us manage Lucy’s health—they can’t treat any of the issues affecting Lucy and other BBS kids because there are no treatments yet. 

BBS is a rare syndrome which makes it hard to conduct research to find and test possible treatments.

Dr. Haws, the doctor leading the BBS Center of Excellence at the Marshfield Clinic is aiming to form a National BBS Registry.  A registry is critical for research because so little is known about this rare syndrome.

A BBS registry will allow doctors and scientists around the world to speed up their research and enable a couple key things:

1) a comprehensive investigation of the causes and effects of BBS which will help us understand what can be done long-term

and

2) it will help doctors test possible treatments and make it easier for them to raise research funds. We don’t want the talented doctors and scientists studying BBS to waste time trying to find people with BBS and running the same medical tests over and over. A registry will let researchers skip a lot of time-wasting and expensive repetitive steps. And that means possible treatments for Lucy and other kids in need sooner.  

So many great possibilities but getting all this essential work underway takes money. 

Lots of money. 

And we want to help.

I believe there is nothing like a group of devoted, passionate families aiming to save their children's vision (and health) teamed up with passionate doctors and foundations...to make things happen.  Together I believe we can be strong.  So strong that we can grab the attention of the Foundation Fighting Blindness and other organizations doing heavy research and approving needed clinical trials that can save those baby blue eyes of Lucy's (and the eyes of so many other BBS kids who's worlds are gradually getting darker and darker around them).

We are passionate about helping any way we can because we know how much this could mean to Lucy's future as well as the future of so many other BBS kids out there.  It is so heart wrenching to watch your daughter lose her vision and struggle with health issues.  We have felt the heart-break of so many other families all over the world as we have met them either at conferences or through blog cyberspace.  BBS is real.  And now we feel like we can DO something about it which makes us feel so empowered. 

Dave and I have committed to help raise $15,000 for the cause (it will take well over $50,000 to get the registry off the ground).  

We would love to enlist your help. 

We would like to invite everyone who lives locally to come join us for the Gilbert Turkey Trot on Thanksgiving morning.  100% of the proceeds go to help children in need.  

The link is HERE.

If you are not local but would like to help, there is a big red "donate" button at the top of this blog that you can click on to make a donation.  

Dave and I are so passionate about this that we are willing to match any funds raised on this blog, which makes any efforts go that much further. 

Please let us know if anyone has any other ideas.  As you can see, we are pretty passionate about this.  Clinical trials take a LONG time and our hearts are just aching to make this a reality for Lucy before it is too late.

Love,
Shawni & Dave


8 comments:

  1. I love the idea of auctioning some of Lucy's artwork. That would be a fabulous fundraiser! Everyone loves Lucy's artwork!!!
    Best wishes from Seattle

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  2. Just wondering if the deduction is tax deductible? It says 71 Toes Foundation but couldn't remember if ya'll had made it an official non-profit.

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  3. I guess this shows that clinical trials have far more importance than we think. They're not just about honing a drug, so much as about nurturing people and bridging the gap of possibilities for cures.

    Krista @ Altus Research

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  4. We are working on the non-profit status but so far it's so darn hard to get it to go through, especially with the government shut-down a while back. Everything is backed up. Hopefully it will come through soon.

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  5. I would love to help out or find out how to raise money for research. My 9 month old precious boy has BBS. He has a team of doctors and is closely monitored in all areas and doing well, God bless. It's always in the back of my mind his possible vision loss. Would love to talk to you by email further. I've only found one other family blog on this since it's so rare. If it was not for my amazing genetic team from when I was 20 weeks pregnant we would have never known till later on if he developed issues. At least we know and monitor him. I can be reached at nikkimahopac@gmail.com. God bless you and your family...

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  6. Hello!
    I have a quick question about your blog, do you mind shooting me an email when you get a chance? Thank you! - Cameron

    Cameronvsj(at)gmail(dot)com

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  7. hello
    wonderfull
    :-)
    http://frommumtome.blogspot.com/

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  8. http://usafreebiessamples.blogspot.com/

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