Tuesday, November 15, 2016

What is BBS anyway?

BBS stands for Bardet-Biedl Syndrome.  It is a rare genetic disorder with symptoms that include retinal degeneration, obesity, polydactyly (extra digits of the hands and/or feet) and can lead to renal degeneration in some cases.  It affects approximately 2,500 people in the United States.

While there is no cure for BBS at this time, the families affected have worked earnestly to help the research expand and progress. Through the efforts of the Marshfield Clinic, an organization dedicated to helping those with BBS, a clinical registry has been established which has already begun to serve as a very important tool to help researchers in their quest find answers about how to combat BBS issues.  

I love this video the BBS community has put together to explain the importance of the clinical registry (and to show some of the faces of BBS children). 


For more detailed information about the registry click HERE.

For more in depth information about BBS, click HERE.

To check out the family association on Facebook, click HERE.

And to meet a few of the great BBS kids fighting (along with their families) to find answers to help with their health issues, keep scrolling.










Because of generous donations of so many, these kids and hundreds more have hope for their future.  

So do their families.  

And that means the whole world. 

Tuesday, December 1, 2015

Turkey Trot 2015

The turkey trot came and went and I'm so proud of these men who pulled off that giant feat!   It was the grandest fund raiser/fun-Thanksgivign-morning event.
The prep and planning for this dealio is pretty amazing...all the website details, t-shirt orders and design, registration craziness, funding, traffic control, police on-hand to close off roads, port-o-jons, food & water stations, race route, signage, large and small complications that come up throughout...you get the idea.  But they did it and they pulled off a pretty fabulous event for a record-breaking 2,300 runners this year.

Wow.

I concentrated my pictures mostly on the Families Fighting Blindness stuff, so hopefully I'll get more soon from the official photographer but Elle, as the official videographer got a few of the starting things.  Here's one of registration before the mobs hit:
Here are some cutie girls waiting to hand out oranges and bananas to the runners.

Brainfood (the other charity benefitting from the event) brought snow machines so people were pretty excited about snow here in the desert near the finish line.
They also worked their hearts out doing the registration.  Dave's whole family showed up to help sort and pack t-shirts a few days before at Brainfood:

Dave, in his love of Thanksgiving and being grateful had the idea for a huge "Thankful Wall."  He delegated the idea to his brother and brother-in-law who made the coolest humongous wall for everyone to graffiti their gratitude on.
Here's a flashback to it's crafting:

I think it was for sure one of the highlights.  Loved that thing that started out like this:
(I like Max's green one up there...:)
And ended up looking like this:

Love that thing.


Since we were trying to help from China last year, we didn't get the word out as much as we would have liked for Families Fighting Blindness, so this year we were able to get the name out a little more.  We had a big back drop for people to take pictures in front of.  The idea was to do polaroid pictures with red glasses for props for donations.  That part didn't work as smoothly as we thought it would, but man alive, we sure had a bunch of family there to help get the word out.

I have much to say about Dave's siblings last week.  I cannot even begin to describe how full my heart was with all their help.  It started at the Turkey Trot, extended into Thanksgiving dinner, and then again surrounding Max with love at the temple, and everything in between.  They filled my eyes with tears of gratitude over and over again.  Much more about them in the coming posts, but oh boy it was so fun to have them all at the race.  We all wore the same Families Fighting Blindness shirts to help promote the cause.

Look at that group:
Honestly, we are so grateful for them all.

My parents joined in the support and we were so glad to have them, especially since their flight was delayed and got in at 3:00am but were bright and ready to help us a few hours later at 6:30am.  
They rock.

Love this picture of these adoring cousins helping the star of the show to cheer up a little bit.  That girl is so lucky to have so much love surrounding here on so many levels.

I got fifteen posters made up to line the canal people ran down through the course of the race to introduce people to the BBS kids they were helping by running.  I never got pictures of all the posters up (Dave put them up for me near midnight the night before), but here are a few:

And here's the informational poster that was at our photo booth:
My BBS parent friend gathered all those pictures and information and used it in their "Bring Light to BBS" fundraising events (HERE and HERE) and let me use the info. for the Turkey Trot.  So grateful we're all in this together.

There was so much going on that I didn't see the beginning of the "fun run" (one mile), but here are some finishers:
 Then it was time to start the 5K:
There was a sea of people starting off that race.  It was awe inspiring for sure.  Here's a picture of the beginning of the "sea:"
...and a little portion of the middle of the "sea:"



...and two awesome turkey hats at the end of the "sea." :)

At first the finishers came in one by one.  Man there were some fast people there!
I liked the technical way Dave kept track of the winners:
Then the runners started trickling faster:
 ...and faster:

Loved our family of cheerers on the sidelines:


So fun to have so many friends there...some from out of town, some helping to run the thing.

 The winners got Freedom skate decks (a company Dave and his brothers bought into).

Here are the first three women:

 ...and first three men:

 Sponsor gratitude:

Dave had to be on two "teams"...the Trot Team and the Families Fighting Blindness...here he is "changing hats:"





Way to go Trot Team!

We left with exploding hearts, so grateful for so much help...so many people there joining in the cause.  I loved that my mom, true to form, stuck it out until the very end gathering all the stuff everyone left behind.

So grateful for this family of mine I adore, and that we're all in this together.

Thank you to everyone who made a difference that day in the lives of all BBS families.