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!

No comments:

Post a Comment