Team GSF is AMAZING! So much goodness. So much positivity. This was an incredible weekend, that is for sure.
Before the weekend even started, this beautiful piece by Mike Klan aired on KEYT Channel 3 News. We showed it at the Pre-Race Celebration Dinner and throughout the weekend people all around town told us they were glad to have seen it and now see running differently. Watch here:
Our Pre-Race Celebration Dinner was held at the beautiful Four Seasons Biltmore this year. It is always a wonderful way to start off the weekend and we love celebrating what has been accomplished before the race — it is motivation for the big run. As we stood presenting new research information, sharing about our programs and what we do, and cheering about our amazing team, there was such palpable positive energy. I looked around the room and felt so supported, so inspired, and so humbled by all these incredible people pushing themselves for the SMA cause. In fact, when I looked at these 120 people — it gave me goosebumps. Time. Energy. Aches. Pains. Doing something new. Asking people for money. It isn’t easy — we know that. But they chose to push themselves physically, mentally, emotionally and we are so proud of them. And we are grateful.
120 runners. 25 generous sponsors. 1000 supportive donors. And together we raised $125,000 for theGSF’s programs!!! To help CHANGE SMA.
This year 17 SMA children were represented – with 13 parents, 12+ aunts/uncles, 2 siblings, and 4 children with SMA running! And lots and lots and lots of wonderful friends. They came from far and wide to be part of this: from Nova Scotia to Vancouver, New York to California and everywhere in between. And 1 SMA dad ran in Afghanistan! We are so honored to have these beautiful children represented in such a powerful way. Pictured and listed alphabetically.
Auni (Utah)
Bailey and Riley (California)
Ciara (New York)
Finley (BC, Canada)
Florence (BC, Canada)
Gwendolyn (California)
Hayden (California)
June (Afghanistan)
Kadence (Texas)
Lucas (California)
Lucy (California)
Miller (South Carolina)
Nella (Missouri)
Owen (New York)
Taysen (Washington)
Van (Nova Scotia, Canada)
Being with these SMA parents (and others not pictured) meant so much. We all get it: the pain, the heartbreak, the perspective, the gratitude… It isn’t a club any of us wanted to join, but boy are we in good company. SMA parents are the strongest people we have ever known. Not because they never crack – but precisely because they are broken and aching, yet push their own worries aside to bring their child joy and to honor them when they are gone. We are left utterly helpless by an SMA diagnosis, but our love for our child is so fiercely strong that we find strength we once never had.
The last time I ran in a race, I ran with Gwendolyn — because of Gwendolyn. I’m NOT a runner. No, no, no. Gwendolyn was the runner. I was the girl in gym class who made any excuse to get out of running a mile. But Gwendolyn loved running and I loved seeing her happy. After cheering for Daddy on the sidelines, she made her wishes clear — Gwendolyn wanted to be a runner. And, as a Dragon Mom, I wasn’t about to let Gwendolyn and Bill go run her first race without me. I needed to make sure she could handle it, she was comfortable, she was okay. We trained consistently for that race… and, miraculously, I had fun doing it. We ran 13.1 miles without stopping, except to suction her a few times. At the end of that race I felt elated, jubilant, powerful, and proud.
This race wasn’t the same. But I knew that going in. I didn’t train well. I cried through most of my training. I ached and gave up many times. I didn’t have my motivator to push me out there. And I missed seeing her tapping fingers, the joy in her eyes. I even missed the worry on my shoulders as I ran and checked her numbers, checked her face for signs of sudden distress, checked the equipment as we ran to make sure nothing came loose… Always worried. I didn’t know what to do with myself when I ran this time. But I was determined to finish. Even if it meant I had to walk across the finish line, I was going to finish.
Race day was beautiful with crystal clear ocean views. But the most powerful thing out there that day was Team GSF. Each person carrying a story of sacrifice, each person pushing themselves for something bigger than themselves. On race day, it wasn’t just about me and my grief. Running is nice — but running for those who can’t is profound. Each step we take has meaning – every single step. And that helped carry me.
I was pretty broken by the end. My knee blew out, my hips and pelvis revolted, I was tired emotionally as much as physically, but I finished. With the help of my dear friend, Jill, who quietly stayed with me and distracted me from my knee’s failing, I got to the end. Then Jennifer Calafiore (Hayden’s mom) came back for me just before the finish line and what she said as we went down the hill made me sob but made me find my grit and I ran again, a bit hobbled, but I ran across that finish line. There are other pictures of me looking strong but this one is how I truly felt inside. Broken but I will NEVER GIVE UP.
Bill was much better trained. He’s run every race with Gwendolyn (2012, 2013, 2014) and was preparing for their fourth Half Marathon together. This time, he wore Gwendolyn’s race bib for her. This race was hard for him, especially at the finish line, which Gwendolyn always loved. He missed her. He ran with our dear friend, Mike, who has run by his side every race. And he felt Gwendolyn out there pushing him along.
We are not alone. That was very clear that day. We are among the most incredible parents, also grieving, also facing the unimaginable. We are among beautiful friends who push themselves over and over and over again for the SMA cause. We are among people who truly are the GOOD IN THE WORLD. What Team GSF does is so much bigger than running. We know now that being part of Team GSF is life-changing. And we are honored and humbled and proud of the 120 people who are helping to truly change the future.
There are so many stories to tell. So much inspiration. Here are a few:
Almost every family we met 8 years ago in our local newborn parent support group called PEP ran with us. The same parents whose babies babbled alongside Gwendolyn. The same parents who lovingly taught their children about difference and acceptance before they said their first word. The same parents who have cooked us dinners after every scare and every time of need. The same parents who have been there rallying around us, spreading awareness, always cheering Gwendolyn on. Some ran for the first time this year, some have run every year. All of them pushed themselves that day.
Gwendolyn’s entire school team ran – her two nurses (one pregnant), her speech therapist, her special education specialist, and the school secretary. Amazing! They are grieving too. They loved Gwendolyn and she changed their lives. They most certainly changed hers.
There were multiple sister teams – all pushing themselves together and making it a positive family experience.
Three of these four moms lost their beautiful child within the last six months. They have all only met online previously. Caitlin had planned to run in honor of Auni, but Auni unexpectedly passed away on September 11. Auni was not yet two. Caitlin decided to still run and her husband, Dallin, and sister ran too. Nicole’s daughter, Finley, passed away on August 2. She also was not quite two yet. Nicole flew in from British Columbia to honor Finley and to find comfort with these incredible women. And, though two of these moms pictured could not run in the race, Michaela’s business Mama Gems was a sponsor, Grace helped take photos, and they came to be together with others who understand. We are so proud of all of them, pushing themselves to be around new people, to travel, to do something like this in the midst of grief. We know Auni, Finley, Florence, and Nella are proud of their brave mamas too.
Three SMA families pushed their children in the race, one pushed two. And they were all awesome and inspiring to run with!
Kadence Hastings is 6 years old, has SMA Type 3, and ran the half marathon with her parents, Rusty and Jessica. They flew in from Texas specifically to run with Team GSF. This said this was was the hardest half they’ve ever run, a lot more hills in California than in Texas. But they know running is a gift and giving their daughter this running experience as a family was important. Sweet Kadence had so much fun out there. And the Hastings are already pumped up about brining a team next year.
Cherisse, Lucy’s mom, has run with Team GSF in Santa Barbara for the last five years. And she’s incredible – strong, determined, fast. Each year more and more friends and family have joined her. This year, a whole group of friends from Palo Alto came down and Cherisse’s eight brothers and sisters, and their parents, flew in from all across the country, making a family reunion out of the weekend. Because this year was extra special — Lucy (and her brother and sister) ran, too. From Cherisse: “So many family and friends raced this year. Even though I never expect them to, they train, fundraise, travel and run and I absolutely love sharing this experience with them. It is humbling to constantly be lifted by those who surround us and we will forever be grateful. Lucy trained really hard, and she was so patient with me as I tried different running strollers (3 different ones!), positions, cushions, etc. We did a lot of training runs with the older two kids and she was always so sweet to cheer them on but then she would also banter, just like any younger sister would. She had a hard time waking up on race day but she was so excited and she loved seeing all of the NEVER GIVE UP. shirts and friendly faces. She loved it so much that she asked me if we could do it again next year — but do 14 miles instead of the 13.1. Ha! This girl – she is my hero, she is my inspiration, she is my never give up.”
Two children with SMA means pushing them both so they can both experience the wind in their hair. Riley and Bailey Sommerville are sisters, aged 3 and 2 from Orange County both have SMA Type 1. Joanna says she made the choice that she is not going to let their SMA diagnosis stop them, which is why she decided to run this half marathon with her girls. She previously ran a 50-mile ultra so physically she was up for the challenge — but two children plus all of their machines. Wow! I don’t think Joanna realizes how amazing she is. Running behind them was more motivation than anyone ever needs. Riley and Bailey can sit up a bit so she was able to use a double Bob stroller and since they are still small she could pack it with life-saving machines. It definitely wasn’t light-weight though. When the feeding machine starting beeping, her friend, Tim Brady, took the handlebars and Joanna fiddled with the bag and reset it all — and they never stopped running. When the girls were asking questions, she handed them cups to play with and ran in front of them backwards so they could see her face. She pushed them through most of the race. She never complained. She gave her all. And, with the help of her wonderful friend and her husband joining her at the last mile, they finished 13.1 miles — with smiles!
This is Team Taysen. Motivated. Organized. Spirited. And wonderful! Melodie is mom to Taysen, a gorgeous, incredible boy who has SMA Type 2. She was actually the very first person to sign up for the 2015 Team GSF — officially registering the day after Christmas. And she already had this fabulous group of friends fully ready to do this with her. Having good friends by your side when facing something like SMA changes everything! They live in Lynden, Washington and all year long have been actively training for the full marathon. They’ve trained together, done cross-fit, run races all over the place, with Taysen part of everything. Because the full marathon in Santa Barbara was suddenly canceled, two of the Team Taysen runners decided to create their own “Chasing Taysen 26.2” — running a full marathon just two weeks before coming down to Santa Barbara for the race, and Taysen cheered them on as they completed their 26.2 miles in record time! And all of them took on the Half Marathon as a challenge – with the entire team setting personal records! They had such positive energy around the entire weekend and together Team Taysen raised an amazing $10,000!!! From Mel: “Feeling like I have the best friends a girl could ever ask for. Thank you all for the love and support you have shown Team Taysen. What a wonderful group of people to share this journey with me. Walked away from the Team GSF pre race dinner feeling all sorts of inspired, grateful, humbled, and ready to continue forging on.”
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So many people pushed themselves to be part of Team GSF. For many, this was their very first race. In fact, when Kirsten Cyr signed up she thought a Half Marathon was 5 miles
This is Chris Kolendrianos, father to Sorel, and Heather Needham, mother to Zoey. Neither of them has a child with SMA. But their children also face devastating diagnoses. Beautiful Sorel has the rare disease Rett Syndrome. Darling Zoey had a stroke in utero, has down syndrome, and battled leukemia. Both ran with us this year, and they have both run with Team GSF before. One of the many lessons we have learned on this journey is our human experience is a shared one.
Lieutenant Colonel Chris Howsden with the Green Beret Special Forces had planned to run with Team GSF in Santa Barbara this year in memory of his beautiful baby June, who passed away from SMA — but Chris was deployed to Afghanistan. Chris decided to run with us any way. After working all day (he works 7 days a week there), he donned his NEVER GIVE UP. race jersey and went out and ran 13.1 miles — in the dark. In fact, for portions of the race, we were all running together — morning for us, night for him. “We run for ourselves to personally connect to the memory, emotion, and struggle of our little heroes. We run for Team GSF as the roadway warriors of the SMA family bringing awareness and resources to the fight. And we run for others, too many others, who are in the fight with this disease, in the fight for treatment or a cure, or in the fight against the grief that ultimately catches up to us.”
This amazing mama, Jenny Deakyne, is the mother of four children between ages 8 and 2. Jenny ran her VERY first race last year – a half marathon. She did great and we were proud to have her on Team GSF. This year, however, she decided to run the full marathon. She has been extremely dedicated, waking up before all of her children, before the sun was even up, to train, while still being super mom with all the many things she juggles and does so with a smile. She put in the hours and the sweat and was determined. When the full marathon was cancelled, she said “So what? I’m running it anyway!” On race day, Jenny started at 4:50am, ran 13.1 miles, in the dark, to get to the official half marathon start where she joined the rest of Team GSF – and then ran an additional 13.1 miles. This wasn’t something that came easily for her. But in her words: “Running for Gwendolyn literally pulled me out of a deep, dark hole of depression and anxiety. Running for Gwendolyn made me better. Made me a better mom. A better wife. A better friend. Running for Gwendolyn made me a better person. It’s not just about the race for me.”
Inspiring Team GSF story! Emily Martinello planned to be part of Team GSF in Santa Barbara for over a year. She flew in from Nova Scotia to run and was determined to raise more than her flight cost – she succeeded raising $2,333 from bake sales and sharing her story and the SMA cause with everyone she met. Emily learned about theGSF after working with one of our Project Mariposa iPad recipients, Van Bernard. Van became an important person in her life and Emily set this race as her goal because she wanted to run with Gwendolyn. The thought pushed her to do more than she ever had before. From Emily: “What you did for Van made me want to give back. In November 2012, I was driving along the highway, and through a series of unfortunate events, was hit head on by a transport truck carrying lumber. It was months of rehab, before joining a gym, and in July of 2013, I started adding in running to my workout. I was running 10 minutes/day, and it was hard. Every single run I thought of Gwendolyn running, and I kept going. For more than 2 years now, not a single run has passed without me being inspired by Gwendolyn, you, and Bill. Since my accident, I’ve lost 50 pounds, and gone from not being able to run 500 metres (even before my accident), to running half marathons! I credit Gwendolyn with so much of my success – I am so proud and honoured to be running in Santa Barbara this year to say thank you, and to give back a small piece.”
This crazy New Yorker is Lauren. She started running for Owen Shuler, a perfect blue-eyed baby boy. Owen was born to Dorothy and Jon, dear friends of Lauren’s, and was diagnosed right after Gwendolyn. We loved him immediately. Owen passed away at only 5-months-old. And Lauren became part of our family. We call her Auntie Lauren now because of her constant love and support for our little girl. For the last 7 years Lauren has been running for Team GSF – she was Team GSF in the beginning. She’s Boston qualified multiple times, has flown out to Santa Barbara for the last five years to join us in this race, started the wonderful NEVER GIVE UP. Running Club for low-income children living in the Bronx, and is constantly teaching new people about SMA and what we do. Now Lauren has set her sights on running a marathon in every state – yep 50 full marathons – and this year she is 18 marathons to her goal!
There is a lot of sadness in the world right now. A lot of fear. A lot of dark. But we believe in the GOOD. We have witnessed it over and over again. Team GSF is one example. People pushing themselves to make a difference. We are honored and humbled and grateful for all of these remarkable people. We hope you feel inspired by the good in these stories too. Check out all the photos and feel the positive energy on our Facebook album HERE. A huge thank you to Portraits for Causes photographer Kristen Hammonds and Grace Grutter for capturing these great images.
Thank you Team GSF for being the GOOD. Thank you Team GSF for being NEVER GIVE UP.
Join Team GSF and turn any race near you into CHANGE. Learn more >> TeamGSF.com