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Easy Ways You Can Support BBS Research
Giving Tuesday, Amazon Smile, and More
Giving Tuesday is a grassroots effort to shift focus after Thanksgiving from shopping to giving. On the Tuesday after Thanksgiving (December 2nd this year) more and more people are making donations to their favorite charities and encouraging others to do so as well.
Now that we have officially received IRS charitable organization status, we can take part in Giving Tuesday. So won't you make a donation to the BBS Foundation on December 2nd and ask the people around you to do so as well? When you do, make sure to post it on your Facebook page or on Twitter with #givingTuesday and encourage others to join in.
But opportunities to support BBS research and treatment this holiday season don't end there. Amazon recently launched the Amazon Smile program. When you shop at smile.amazon.com 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.
Go to smile.amazon.com, 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 Holiday shopping.
But if you're looking for a special gift that directly supports BBS, we're now selling bracelets made by children with BBS and their siblings. Olivia Howard, a BBSFA member, is leading the effort. If you'd like to help out please contact Olivia. All profits from bracelet sales will go to the BBS Foundation. Check out the bracelets here.
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$100,000 for BBS?
We're nearing a blockbuster milestone for funds raised to support BBS research, treatment and education. That's because of two wonderfully successful Bring Light to BBS fundraisers held this fall. The Novetzke and Alms families kicked it off with a "Foot Golf" and dinner event in Minnesota in September. The West's held their own golf outing in Atlanta in October. Both events raised more than $25,000.
Combined with funds raised before and after this summer's conference, we have raised nearly $90,000 this year to support the BBS clinical registry, the BBS Center of Excellence, and to move our efforts at building resources for BBS families forward.
With your help we can cross the $100,000 threshold before the end of the year. So please take the opportunity to promote GivingTuesday gifts to the BBS Foundation, to sign up for Amazon Smile before you do your Christmas Shopping, and encourage your friends and family to do so as well.
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BBSFA Directory Beta Test
Since the conference BBSFA member Michael Mattax has been hard at work developing an online directory for BBSFA members. The idea behind the directory is to make it easier to find BBS families in your area or with a family member affected by BBS in a similar age range. In addition to that, we've added the ability for members to include doctors who are familiar with BBS and supportive of families.
After a long development process, we're ready to announce the "beta test" of the online directory. This means that we think everything is ready-to-go, but there may be a few more kinks to work out.
To check it out, visit members.bardetbiedl.org. On your first visit, you'll click on "Join" to add your information and set a password. If you're a current member, at the bottom of the page you'll see a checkbox to note that your dues are paid. If you're not a current member, you'll be taken to PayPal to get current. Once you've joined, you'll be able to see a map of BBSFA members and you'll be able to get contact information for other families and see doctors that our early testers have already entered. If you have doctors you think should be included, please add them!
If you have questions about membership, contact Mary Morris. If you're having technical difficulties with the site or notice something that needs to be fixed, send an email to Michael Mattax by clicking here.
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BBS Weight Management Study
The BBS Family Association has partnered with the Marshfield Clinic to apply for a grant from the Patient Centered Outcomes Research Institute (PCORI) to study weight management in people affected by BBS. There is very little known about how people with BBS can effectively control their weight. Excess weight is a major contributor to illness in people with BBS and can be a barrier to enjoying life to the fullest for some.
PCORI was established by the US Congress as part of the Affordable Care Act. It funds research that addresses the questions and concerns most relevant to patients and caregivers. Certainly weight management in BBS is a major question and concern for many BBS families. Grants will be announced in April, but Dr. Haws and the Marshfield team are very optimistic that our proposal will make the cut. Stay tuned in the spring, as we hope to begin enrolling participants then.
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CRIBBS Worldwide!
CRIBBS, the BBS clinical registry is off to a flying start. Not only have we been able to raise enough funds to accelerate the process of adding people to the registry, but now CRIBBS has received all the necessary approvals to include people who aren't in the United States. Because there is personal medical information involved there are many steps of approvals required to reach this stage. Dr. Haws and his team have gone the extra mile to get it done this quickly. Being able to include people from all around the globe will make the BBS registry that much more useful to researchers.
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.
Further proving the incredible job the CRIBBS team has done, the software developed for CRIBBS is now going to be used by other rare diseases for clinical registries. In other words, all the hard work and dollars invested in CRIBBS are already starting to change the world.
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Clothes Shopping for a BBS Child?
BBSFA Vice President Donna West recently came across a new site that has proven invaluable to her in finding clothes for her son Tyler. According to Donna: "Seriously the best husky clothes I've found. I have ordered Tyler shirts and pants and LOVE them." Check out HuskyFashions.com
Know of other resources that would be helpful for BBS Families? Let us know!
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