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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How I Believe God Is Looking Out for Lucy
I am a big believer in looking for the miracles. Especially in the tricky times. Because Dave and my mantra is true, to be sure: “we find what we’re looking…
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BBS Vision Restoration Research and Friends in Iowa
After we left Utah for the first part of spring break, we headed to Iowa for some pretty incredible BBS vision restoration research, and to spend time with some of…
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How to Get Through High School with Low Vision: Managing School When You Can’t See
Managing school with low vision is one of the hardest things a teenager can face. School is out here in the desert, and I want to take a minute to…
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How to Get Involved in BBS Global Awareness Day
Bardet-Biedl Syndrome (BBS) is a rare genetic condition that affects many parts of the body, and for families like ours, it shapes daily life in ways most people never see….
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some of the BBS families in our village
I was talking to a friend the other day. A friend who also has a teenager with some special needs. It was so good to be able to relate on…
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Lucy’s syndrome is a “rare disease”
Just wanted to connect people to the BBS Family Association Instagram page which is HERE. Because yes, today is Rare Disease Awareness day. And any type of awareness about syndromes…
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Guess what? The turkey trot is coming!
Remember when it was the first ever Global Awareness day for BBS? (Yeah, if you don’t, I wrote about it back HERE.) Well, we have our own little local BBS…
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A little extra awareness about Lucy’s syndrome
When Lucy’s choir teacher asked me a few weeks ago to tell him more about what’s going on with Lucy, I realized we needed a little teacher meeting. Knowledge is…
