Posts in category: Blog

Today is the big day! The Stone family are officially on their way on their 7 Countries in 7 Days Tour. The Stones: Chris, Laurie, Connor, and Jessica, are dear friends of ours who have been living abroad over the last year for work. Before they return home, they decided to do one last European trip — a BIG one. And they have turned it into an opportunity to talk about SMA and raise funding for theGSF's programs!

It's no secret that our favorite things are children helping children and people pushing themselves to help the SMA cause. Well, the two have combined and our “Love Meter” is overflowing! We are so honored the Gwendolyn Strong Foundation was selected as the charity recipient of this year's Keiki Paddle. 100+ kids paddle boarding 11 miles in the open ocean! AWESOME. 

This year has been such a pivotal year for Gwendolyn. She has socially thrived, academically blossomed, asserted her independence, and she has really come into her own. Our entire life's focus is to see Gwendolyn happy, to see her live a meaningful life. In this year's kindergarten experience, we know with full certainty that her life is exactly as she wants it to be — with her right in the middle of everything.

On Monday, Gwendolyn ran with me. Yup, you read that right. For the first time, Gwendolyn ran with me. And it was awesome. Simply awesome.

This was a long time coming and I had planned months ago during my Marathon training to start running with her. But for this reason (training injuries, lack of confidence, etc.) or that (Gwendolyn's strength, etc.), it just never happened. Until last Monday.

We are beyond excited and thrilled to announce theGSF's newest initiative: “Project Mariposa.” Project Mariposa has a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants. Project Mariposa will initially focus on granting iPads to those impacted by Spinal Muscular Atrophy (SMA) — 50 iPads in 50 weeks. Yep, you read that right — theGSF will be granting FIFTY iPads in FIFTY weeks.

We have had a very merry Christmas and are still basking in the glow of all the festivities. It is a bit disappointing as we clean it all up because Gwendolyn has loved every second — and all in a new more grown-up way. Her excitement this year was with knowing and expectation of traditions we have created in year's past — and that feels amazing. This week we visited and celebrated with friends, looked at the neighborhood lights, put up all the new holiday cards (with Gwendolyn inspecting every one), had Christmas Eve dinner sitting on the patio of our favorite Mexican restaurant, got everything ready for Santa to visit, and then Gwendolyn actually slept all night with me cuddled next to her and we woke up to a wonderful and full day with Bill's family. It has been a make-my-heart-full kind of week.

If you follow us on Facebook then you already know we spent four days at Disneyland last week — and it was fabulous. I absolutely LOVE Disneyland. In fact, I'm not sure who was more excited about it, Gwendolyn or me — although my excitement comes from watching Gwendolyn's excitement and she was so beyond thrilled once again. A few years ago I would have never imagined it, but Disneyland is now definitely up there as a can't-wait-to-go-back-to-place. Hawaii has nothing on Disney (okay if we could really take Gwendolyn to Hawaii, sign us up!) But, back to Disneyland… what has become even more special is we always go with Gwendolyn's super best friend, Hayden, and her super awesome parents, Jennifer and Chris. And so on top of all the Disney WOW!, on this trip they also got to have nap-time sleepovers, a dress-up princess day, a makeup party with so much glitter we may be on an episode of Toddler and Tiaras, matching outfits and matching pajamas, hand holding, singing together, and so much fun being side-by-side. Everything is better with a best friend!

The Gwendolyn Strong Foundation (theGSF) and FightSMA award a $100,000 research grant to Dr. Monique A. Lorson and University of Missouri to advance game changing, first-of-its-kind SMA research. We are so excited about this program and this grant would not be possible without YOU.

Yesterday we decked the halls and trimmed the tree and loved seeing Gwendolyn so excited. At four, Miss G definitely understands the concept and she cannot wait for Christmas day. She is very serious about it all and it is so darling. She listens intently to everything and you can see her little mind working and processing it all in a new more mature way than in years past.

Palm trees and snow flakes — at the Santa Barbara Zoo it was a snowy day. Yesterday we attended the Santa Barbara Zoo's Snow Leopard Festival, a day when they bring an ice making movie crew up from LA to create snow for sunny Santa Barbara. (A bit of cheating, but still snow ) Sledding, ice skating, snowman building, and snowball throwing — for Gwendolyn it is magical and for us it has become a truly special tradition.