Monday, October 19, 2015

another Turkey Trot on the horizon

It's that time of year again when we are gearing up for the next annual TURKEY TROT on Thanksgiving day.

It started as just a neighborhood gathering, and over the years it has turned into something so much bigger than itself.

Not only is it a fun way to gather and be active before the giant feast on Thanksgiving, it raises money for such great causes.

Every penny donated goes toward helping families.  Half goes to supporting Brain Food (read all about that awesome organization HERE), and the other half goes to raise money for research and a clinical registry for families fighting BBS (much more on that with a very informative video HERE).

The turkey trot last year helped fund the launch of the clinical registry that will help countless BBS kids to hook up with researchers who can help them.  Now we just need to keep it running and help fund any new research that can help fight blindness 95% of kids with BBS face in their future.

The registration for 2015 is HERE so go sign up!  I'm getting excited :)

Sunday, October 18, 2015

update on the clinical registry

Great strides are being made to help kids like Lucy who are battling BBS.

Last year was a banner year in fundraising to help fight blindness and the other effects of BBS.  The biggest leap in the right direction was the long-anticipated and awaited launch of the "Clinical Registry" which will help those affected with BBS more than anything else that can be done at this point.  

Here's why (a letter from the family association):

BBS registry update

The association's top priority for the last few years has been launching the Clinical Registry Investigating BBS (CRIBBS). There is nothing we can do to advance BBS research more quickly than having a well-populated and up-to-date clinical registry.

As you know, CRIBBS launched last year with tremendous support from the association and from the Marshfield Clinic. Our wildest expectations for fundraising and participation have been exceeded. And the work is already paying dividends.

More than 175 families from almost 20 countries have joined CRIBBS. As a result, CRIBBS is already the most comprehensive set of information about how BBS affects people ever created. It is a goldmine for research. Consider that most medical research involving people with BBS before CRIBBS studied less than 30 people.

That treasure trove of information for BBS research has already yielded important new research: Dr. Haws and colleagues have a study forthcoming on transplant in BBS patients, finding that outcomes are quite positive. This is very important as some members of our community have been refused needed transplants because of concern that the transplants wouldn't work well.

More research is coming soon as researchers will be able to study the data in the registry. Already a project on speech development is underway. We'll keep you updated as the research advances. You can see more information about BBS and CRIBBS at the brand new webpage that Marshfield Clinic has created.

If you know someone affected by BBS who hasn't signed up for the registry yet, no matter where they are in the world, send them here.

To continue these amazing achievements, we need to continue to support CRIBBS. You can donate to support BBS research and CRIBBS by clicking here or here.

How You Can Support BBS Research

To keep the momentum going on BBS research we will need to continue to raise funds. Our first year of fundraising was a tremendous success--we raised more than $100,000 thanks to generous donations from families in the association and fundraisers held by the Alms, Novetzke, West, Pothier and Ogden families.

There are already plans underway for additional fundraisers. The West family will be holding the second annual Bring Light to BBS golf tournament in Atlanta in October. The Alms family (Minnesota) and Ogden family (Pennsylvania) will be hosting Bring Light to BBS events this fall as well. And the Pothiers (Arizona) will be hosting their third annual Turkey Trot to raise funds.

If you're interested in hosting a fundraiser, but want some help, please don't hesitate to reach out to BBFSA board members Donna West and Bill Alms.

But you don't have to host a big event to make a difference for BBS research. The Ogden family was able to raise $10,000 simply by emailing friends and family and asking them to donate to CRIBBS. The Howard family sold bracelets. You can donate directly by sending a check or via Square Cash or PayPal.

Even getting your friends and family to use the Amazon Smile program when shopping can help raise funds. When you shop at 0.5% of your purchase is donated to the charity of your choice. It's the exact same Amazon shopping experience with the exact same prices, you just get to support BBS research and treatment too. To get started go to, search for Bardet Biedl Syndrome Foundation, and choose us as your designated charity. Then tell your friends and family to do the same before they do their back-to-school shopping.

Please join the many families who are supporting BBS research!

Sunday, November 9, 2014

4th Annual Turkey Trot is coming soon!

Click HERE to get to the site and sign up!

Wednesday, July 16, 2014

BBS conference in Iowa

So many exciting things were discussed at the latest BBS conference which was held at the University of Iowa.  Lots of good research and hope on the horizon for BBS families.  Lots of details and pictures over HERE.

One of my favorite parts was the announcement that the BBS National Registry is officially in the works.  Part of that is being funded with the money blog readers helped raise (back HERE).  Thank you THANK YOU!!   The Marshfield Clinic has donated the time and resources for the  initial development, and the funds will pay trained interviewers to work with families to gather and validate all the medical information from each person with BBS necessary to populate the registry.  The more money we raise, the faster we can include people in the registry and the sooner doctors and researchers can get to work developing therapies and treatments for BBS.

Here's a video with all the information about the registry:
We hope to raise $75,000 as a BBS family this year, so those funds YOU helped raise along with the $10,000 Tim (the BBS President) has raised have helped us get off to a great start.

One of my new friends (another parent with a BBS child) told me he feels like the BBS family has been like a developing country without much support or resources, but that now it is becoming so empowered with so much exceptional, specialized help.

That's exciting to think about.

Wednesday, December 4, 2013

Turkey Trot 2013

We are so incredibly grateful for all the people who showed up and participated in the Turkey Trot this year!  See all the pictures and details over HERE.

Thank you from the bottom of our hearts for all the support and love and encouragement.  Thanks to all the donations, the national registry is under way.  More information coming soon.

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


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 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.

Shawni & Dave

Sunday, November 17, 2013

in the news...

When we were at the Marshfield Clinic last month they took a little video footage for their local news show.  This was after two full days of doctor visits so Lucy is a little zombie-ish by this point, but you get the idea.  SO very grateful for this Clinic and all they are doing to help families like ours!

WAOW - Newsline 9, Wausau News, Weather, Sports