With the help of the BBS community we’ve figured out a way to make those funds work specifically for BBS kids through starting the clinical registry that helps researchers help our kids. Much more on that over HERE. Last year we were in China and weren’t able to coordinate the BBS side of the Turkey Trot as well as we wanted to, so we’re excited to run with it this year, as other families have done through their own family fund raising (more about those efforts HERE). Our good friends in the BBS community just held a great golf tournament to raise money and others are joining the cause. I loved this great thank-you video they did after the tournament:
Thank You Golfers! from Alms Creative on Vimeo.
All of us BBS families know that vision research, especially the pin-pointed kind we need, takes funds. Lots and lots of them.
10 comments
oh how i love that beautiful creative logo! and oh how i love lucy and your sweet inspirational family.
wahooooo shawn this is awesome. the name and logo are perfect!!! love you and love Lucy.
I love the logo!! The red glasses are perfect!!
I wish we didn't live so far away! (We're in Utah) We would totally come!
Your SIL did a great job on the logo!
Is she getting any skills at school or elsewhere to help her 'see' via her other senses? Do you have a book reader for her or a device where she can listen to books? Access for Braille titles?
Shawni has posted several times about Lucy's amazing braille teacher. I think it is wonderful that Lucy gets to bring a friend with her for braille time. A nice way for Lucy to not feel excluded or different for learning braille.
I'm thinking as a former librarian, in a different state, that I never noticed her reading Braille books in the photos posted. I do remember the Braille type writer. It certainly tugged at my heartstrings when she mentioned uncertainly about her love of books and the impact vision loss would have. She may already know about how to get materials. Even if the local library does not carry any or many there should be a way to get listening books and Braille titles through them. Or they can pass you on to an org in your state that does it. There were also movies made with the vision challenged in mind, describing what is happening on screen. With technology there could be newer devices of help. I don't want her to lose her stories and imagination. I also thought of life skills and independence. Does the Braille teacher also teach things related to independence? Would an OT? My son also has special needs, but they are not vision related.
I certainly hope there is a breakthrough.
The story of Lucy and the clear glass tugged at this mother's heart so much. Tears.
The logo is perfect. So creative. Wishing you all the best at the upcoming event! Lisa
Such a scary story! It's so hard to tell just how much she sees but I'm glad she's under your watchful eye. We are so excited to be there to help with the Turkey Trot this year. Can't wait to actually have a chance to see it in person! I LOVE LUCY!
The part about Lucy not seeing the empty cup/glass really touched me, it must've been really hard for you to watch her doing that.
I'm so glad that you have a charity that is helping you with these things.
Your sister-in-law's picture is brill, I especially like the red colour of the glasses.