Gwendolyn gave a speech today! Yes, a speech — to her whole class. Our determined, brave, resilient little girl is so proud to speak and share her thoughts and personality. And she should be. With the help of Say Hi! AAC her world just got a little bit bigger. Knowing that Gwendolyn wants so much to be heard that she is more than willing to put in the extra work to make that happen is, well, beautiful and inspires us more than I can explain. With the right tools, some out-of-the-box creative thinking, and a team of people who understand and believe in her, Gwendolyn continues to expand her own horizons and take us all along on the incredible ride. Today we are extra proud parents just in awe of our amazing little girl!
NPRNA Signed Into Law By Obama. We Reflect On Our Personal Journey With SMA Legislation.
Last Wednesday, the National Pediatric Research Network Act (NPRNA) was officially signed into law by President Obama. And, for us personally, passage of this legislation feels like a triumph that has come full circle to the beginning of our SMA journey.
2013 SBIM Team GSF Truly Created CHANGE
80 inspiring runners + 25 generous sponsors = $90,000 raised! Which allows us to fund more RESEARCH, grant more IPADS, create more unique AWARENESS, and more effectively ADVOCATE.
June’s Quilt Auction
June Marie Howsden was born to Chris and Molly Howsden, and big sister, Virginia, in 2009. June came into the world struggling, born with Type 0 Spinal Muscular Atrophy, the most severe form of the disease, had stopped moving in utero, and had to be intubated to help her breathe at birth. But she was immediately surrounded by LOVE. Sweet June only lived for three weeks. To honor June and celebrate her birthday, the Howsden family created the annual June's Quilt Auction. 28 beautiful handmade items, from large quilts to darling dolls to purses, benefit the Gwendolyn Strong Foundation's Project Mariposa. In fact, 100% of the bidding goes directly to buying iPad's to make the world accessible to those with SMA. So, bid high and bid often! The auction ends THIS Sunday, October 27th. Sweet June came into the world struggling but she continues to share her beautiful love.
Gwendolyn is SIX!
Today Gwendolyn is SIX and we have spent the last six years truly amazed by her. We are beyond thankful for the incredible little person she has grown into, relish each adventure she takes us on, and are eternally grateful for the opportunity to experience life through her eyes. Today we celebrate, not because she has survived six years, which is a feat for an SMA Type 1 child, but because she is living her six years so fully. Life isn't always easy, but in so many ways — because of Gwendolyn — it is perfect, she makes it so.
Gene Therapy Gets The Green Light For SMA Human Clinical Trial
There is no way to adequately encapsulate the SMA-community-wide effort that willed the systemic AAV9-delivered human SMN gene program at Nationwide Children’s Hospital to where it is today. Over the years, nearly every family impacted by SMA had a hand in propelling gene therapy forward and nearly every SMA nonprofit funded critical portions at different stages. It’s impossible to know, but we’d estimate tens of thousands of people donated in some form to this specific program. At theGSF, we’re proud to have been part of funding, alongside FightSMA, the program’s safety and toxicity studies and we look forward to following its progress over the coming months and years as it enters the arduous and sensitive process of moving from mice, pigs, and primates to humans.
Evolutions Medical & Day Spa: Relax, rejuvenate, and support theGSF
From September 21st through October 5th, 20% of ALL services and packages and 10% of product sales will be donated in support of the Gwendolyn Strong Foundation. Services can be booked for during that week or gift cards can be purchased and used at a later date. Be sure to mention the Gwendolyn Strong Foundation when booking your appointment.
Calling Child Artists: Be Part of the Kids Helping Kids Art Show
Calling all parents. Let your child's inner artist shine! Be part of the “Kids Helping Kids Art Show!” We absolutely LOVE kids helping kids and this event is the perfect way to foster philanthropy and allow your children to get involved in the SMA cause.
Calling all ladies! Run She.is.beautiful The Pinkest 5K and 10K on September 22 in Santa Barbara. Sweat. Feel good. Soak in the positivity. And $5 of your registration benefits theGSF. Be sure to enter promo code: nevergiveup. This is the PERFECT race to warm up for the SBIM.
A Magical Week at Pony Camp
Seeing Gwendolyn's eyes filled with wonder and enthusiasm is everything. Everything. She's a happy little girl so she's content most days. But when her entire body lights up with that unmitigated childhood joy as if she's yelling “THIS IS AWESOME!” — those are the days when we know with certainty that in spite of all she faces everything is okay, she is okay. This week Gwendolyn attended Pony Camp with the Little Star Pony Foundation and all was very right in her world.