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BBS

How to get through your Sophomore year with Low vision
Real Life

How to get through your Sophomore year with Low vision

ByShawni June 6, 2023June 6, 2023

School is out here in the desert. The last day was the day before Memorial Day weekend. So let’s talk for a minute about my hero Lucy. Let’s talk about…

Read More How to get through your Sophomore year with Low visionContinue

how to get involved in BBS Global Awareness Day
Real Life

how to get involved in BBS Global Awareness Day

ByShawni September 25, 2022May 1, 2023

BBS (Bardet-Biedl Syndrome) is a genetic “rare disease” that affects approximately 1 in 250,000 people around the world. It causes all kinds of things to go haywire in the body,…

Read More how to get involved in BBS Global Awareness DayContinue

some of the BBS families in our village
Real Life

some of the BBS families in our village

ByShawni July 5, 2022May 1, 2023

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”
Real Life

Lucy’s syndrome is a “rare disease”

ByShawni February 28, 2022May 2, 2023

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…

Read More Lucy’s syndrome is a “rare disease”Continue

Guess what? The turkey trot is coming!
Real Life

Guess what? The turkey trot is coming!

ByShawni October 5, 2021May 2, 2023

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…

Read More Guess what? The turkey trot is coming!Continue

A little extra awareness about Lucy’s syndrome
Real Life

A little extra awareness about Lucy’s syndrome

ByShawni September 24, 2021May 1, 2023

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…

Read More A little extra awareness about Lucy’s syndromeContinue

weekend wrap-up
Real Life

weekend wrap-up

ByShawni May 3, 2021May 2, 2023

I am going to see if I can start to stay a little more up-to-date around here. Like, let’s talk about what happened this last weekend. Started out with Lucy…

Read More weekend wrap-upContinue

halloween amidst flying to and from sunsets
Real Life

halloween amidst flying to and from sunsets

ByShawni November 6, 2020May 2, 2023

Halloween was just plain weird this year. I’m sure many can relate. Holidays are just different during this pandemic in general of course. But there was also some weird melancholy…

Read More halloween amidst flying to and from sunsetsContinue

a day in the life of Wisconsin doctor visits
Travel

a day in the life of Wisconsin doctor visits

ByShawni October 16, 2019October 17, 2019

Ok, really “two days” in the life, but from the time we leave to the time we get back it really is close to 24 hours. We do these visits…

Read More a day in the life of Wisconsin doctor visitsContinue

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