Hope and Hopelessness at a BBS Conference in Our Old Stomping Grounds
Over the weekend Dave and I attended the Bardet-Biedl Syndrome conference in Washington DC (Lucy’s BBS). It just so happens that DC is our old stomping grounds. Yes, we lived…
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The 2018 BBS Family Conference with Lucy: Hope, Hard Stuff, and Our Village
We kind of switched around summer a little bit this year because of the BBS conference. This conference happens every other year, and happened to be taking place in Utah…
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BBS Conference and My Kind of Rock Stars
Attending a Bardet-Biedl Syndrome conference gave me a deeper appreciation for the researchers, doctors, and families working behind the scenes to support those with rare diseases. As a parent of…
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The BBS National Registry: How YOU Helped Raise $10,000 for Bardet-Biedl Syndrome Research
A few years ago we asked blog readers to join us in the I Love Lucy Project, a fundraiser for Bardet-Biedl Syndrome research. I never got around to sharing how…
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BBS Conference at Duke University: Our First Time Attending as a Couple
Dave and I went on a “date” to the BBS Conference at Duke University in June. It was kind of a pre-anniversary, pre-Father’s Day thing. Not the way we would…
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England: The BBS Conference in Northampton
So the reason we went to England in the first place (see the first part of our trip in the last post) was so that we could attend the BBS…
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My First Bardet-Biedl Syndrome Conference at Duke: Finding Unexpected Hope
Speaking of good doctors, I never wrote about the Bardet-Biedl Syndrome conference we went to back in June. And that’s no good, because it was really an amazing experience —…
