Posts tagged with: Spinal Muscular Atrophy
Over the last several years, we haven't shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn's Spinal Muscular...Read More >>
SMA families are exceptionally creative -- out of necessity and out of devotion. And Hayden Calafiore's grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families -- the EASyS. The EASyS is an awesome chair and we have recommended...Read More >>
The Gooden family has been hard at work creating a really incredible resource for SMA families -- InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and...Read More >>
Feeling the need to challenge yourself? Wanting to get in shape? Thinking about getting involved in philanthropy? Well, you have a little over two months to prepare -- the New Bedford Half Marathon is calling YOUR name and so is Team GSF!!!
Rated one of the top 25 half marathons by Runner's World...Read More >>
Yep...it's an extra special, super duper, really big, awesome, stupendous surprise... just in time for Christmas! Gwendolyn's POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here...but most importantly, Gwendolyn is OVER. THE. MOON!!!
Yesterday all three of us...Read More >>
Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours...Read More >>
Let's face it, emergencies are a fact of life for SMA families and we've had our share of urgent medical situations over the years with Gwendolyn -- collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment...Read More >>
On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.
And while I try to sit with the thoughts of him now being able to run free, of him no longer...Read More >>
Ahh what a weekend! It was awesome!!! GSF's Golf For A Cure was held on Friday (more on that soon) and we were so, so excited that several of our SMA friends came into town to support it and spend time with us. The Calafiore's, Chris and Jennifer, and their darling daughter, Hayden, stayed at our...Read More >>
Guess which charity is being featured by Chase Community Giving? Yep, the Gwendolyn Strong Foundation!!!
We are really honored that out of all of the hundreds of charities and great causes who have won Chase Community Giving grants over the last year, that they selected the GSF to feature in a...Read More >>
This is the segment that aired statewide in California on NPR's California Report on Gwendolyn, us, spinal muscular atrophy (SMA), the Gwendolyn Strong Foundation, our petition, and the SMA Treatment Acceleration Act. Thank you Diane for capturing the reality of SMA and creating such an incredible...Read More >>
Today is the first ever "SMA BLOG PARTY!" Thanks for joining us by reading about the #1 genetic killer of young children, posting about this cruel disease, and sharing the links with others. The idea of the "SMA BLOG PARTY" is simple -- bloggers come together to 1) Talk about SMA, 2) Put a face to...Read More >>
We're excited and honored to have been invited by the Muscular Dystrophy Association (MDA) for an on-air family interview during this year's Jerry Lewis MDA Telethon this Labor Day weekend.Few television traditions in America are as popular as the annual Jerry Lewis MDA Telethon or have had such...Read More >>
We are so, so excited! We just received news from the Jimmie Johnson Foundation that the Gwendolyn Strong Foundation (GSF) was selected for this year's Samsung Helmet of Hope!!! We are absolutely honored to be part of this wonderful project and beyond thrilled that more people will now hear about...Read More >>
Gwendolyn's disabilities are such that we...Read More >>