BBS Fundraising, BBS Weight Management Study, CRIBBS Update...
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BBS Fundraising

Bring Light to BBS

We're very pleased that the first BBSFA public fundraiser is happening tomorrow in Bloomington, MN. Titled, Bring Light to BBS, the event features a footgolf (it's exactly what sounds like--golf played by kicking a soccer ball!) tournament and an evening event featuring Dr. Bob Haws and several families from the association sharing their stories. Proceeds of the event are going toward CRIBBS, the BBS clinical registry hosted by the Marshfield Clinic. You can learn more about the event on the Bring Light to BBS Facebook page.

Even better, you can watch a live stream of the event on the web, beginning at 6:30pm Eastern/5:30 Central by clicking here. Many thanks to the Novetzke family and the Alms family for taking the lead in organizing this first fundraiser. They're not alone though, the West family is organizing a BBS fundraiser in Atlanta this fall as well.

Matching Gift Challenge

If you were at our conference this summer, you heard about our new matching gift challenge. An anonymous donor has pledged to match $2000 of donations from 10 families--that's a total of $20,000! Here's how it works: 1) Your family holds a fundraiser--it can be anything from a big event to just sending emails to friends and relatives. 2) Your fundraiser reaches a goal of at least $2000 in donations. 3) The anonymous donor kicks in another $2000.

To learn more about fundraising for BBS or to participate in the matching gift challenge, contact BBSFA Vice President Donna West or President Tim Ogden

We Got It!!!

Fundraising for BBS just got a whole lot easier. Just this week, we received notification that the BBS Foundation/Family Association has officially received Federal Tax Exemption as a 501(c)(3) public charity. That means that tax-deductible donations can be received directly by the Association. To learn more about how to make a donation, contact BBSFA Treasurer Nate Arnesen.

BBS Weight Management Study

The Marshfield Clinic has received an invitation to apply for a major grant to support a study evaluating various approaches to weight management for BBS patients. The grant is from Patient-Centered Outcomes Institute (PCORI)--the goal is to find what methods work best for weight management "in real life." We will need 90 people between 8 and 45 to participate in the study.

The study will look at variety of approaches such as in person work and counseling with nutritionists and exercise specialists, to remote coaching and support groups. The study itself is still being designed and we want input from BBS families on what approaches to consider.

To learn more about the study and to share your ideas on approaches to weight management in BBS, sign up to participate in one of our on-line/phone seminars we'll be hosting by contacting BBSFA Secretary Mary Morris.


Much More to Come

We've got a lot more in store in the coming months for the BBS Family Association. Soon we'll be launching a directory for members, including information on recommended doctors. We're also working on publishing detailed notes from our summer conference.

After that, we'll be launching a new website, and working on a new handbook to share with medical professionals, educators and therapists. We'll be trying various ways to hold Webinars or Conference Calls with doctors, researchers and other people of interest to the BBS community.

If you're not a member, now is the right time to join the Association. Contact Mary Morris for more details.

In the meantime keep an eye on our Facebook page and our temporary website for updates from the Association.


CRIBBS--the Clinical Registry Investigating Bardet Biedl Syndrome--has been a huge success. More than 90 families have signed up. Several families are being interviewed each week and the Registry is being populated. Our BBS families have raised more than $40,000 so far for the Registry. That money is what is enabling us to make such rapid progress.

If you haven't signed up for the Registry yet, please do so! The more people we have in the Registry the more useful it will be to doctors and researchers. To learn more about the Registry, you can watch our video or visit the CRIBBS page at the Marshfield Clinic site.

Sanguine BioSciences

Many people in the BBS family have seen an appeal for donation of urine samples from people with BBS from a company called Sanguine BioSciences. We've been in touch with Sanguine to learn more, and have discussed the appeal and its implications with our medical advisors, Dr. Haws and Dr. Sheffield. Here are the details:
  • Sanguine is a private, for-profit company that is hired by researchers to collect bio-specimens for research purposes. They are bound by confidentiality protocols and Institutional Review Board protocols.
  • We have asked Sanguine to tell us who the client is who has requested samples from BBS patients, but they have declined to tell us.
  • None of our medical advisors or their contacts have ever worked with Sanguine before.
The good news here is that some organization cares enough about BBS to pay Sanguine to collect bio-specimens. None of the above information is necessarily a reason not to participate in this effort. However, in general, we advise caution in donating bio-specimens to unknown parties. The decision about whether to participate in this effort needs to be made by each family, aware that bio-specimens are necessary to advance research while balancing their own concerns for privacy and confidentiality.
Copyright © 2014 BBSFA, All rights reserved.

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