Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

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 Atrophy diagnosis. […]

Little Star and Gwendolyn in Santa Barbara News-Press

You all know that Little Star is Gwendolyn’s animal BFF. She loves him so much and he loves her. I’ve written about them here, here, and here. We are so lucky that Diane (Little Star’s Mommy) is such a dear friend. She always includes us and she always, always makes Gwendolyn feel special. We met […]

Check out | SMA news in one place.

A few months ago the Gwendolyn Strong Foundation (GSF) launched an extremely simple project. It’s called and that’s exactly what it is. Spinal muscular atrophy (SMA) news from across the globe organized and shared from one website. For such a “little known disease”, we’ve always been shocked at the number of SMA articles that […]

NPR – California Report – “A Family Fights Spinal Muscular Atrophy”

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 piece. NPR – California Report – A Family Fights […]

Gwendolyn and SMA on NPR!

We are beyond excited! NPR or National Public Radio’s highly respected California Report is airing an interview about Gwendolyn and spinal muscular atrophy (SMA) this Friday and Saturday! The segment will be aired statewide on Friday at 4:30pm PT on over 30 stations and again in Santa Barbara and Ventura County on Saturday at 2:00pm PT on […]

New York Times: Cap Lifts, and So Do Spirits

Anyone who knows us knows that raising broad awareness of SMA is something that we are pretty passionate about…just a wee bit. And. So. Well. We’re pretty excited around here today. The New York Times ran a vignette on our family today about SMA and our perspective on the two pieces of the new health […]

Victoria Selected As Alpha Chi Omega's "Real Strong Woman"

Victoria was honored and humbled to be selected as Alpha Chi Omega’s March 2010 “Real Strong Woman”. Check out the great feature that is currently running on the Alpha Chi Omega homepage! Click here or on the picture below to read the feature… Raises Awareness Of SMA, GSF

We apologize for being a bit silent over the last several days. We’ve been floored, humbled, numb, overwhelmed (in a good way), celebrating, and recovering from the Chase Community Giving pure madness that consumed our — and most of your — lives over the past several weeks. There is so much amazing positivity surrounding this […]

"To One Of The Lucky Ones, The New Year Means More" — by Ben Mattlin on NPR

“To One Of The Lucky Ones, The New Year Means More” — by Ben Mattlin on NPR, January 4, 2010 I thought I’d share this inspiring essay by Ben Mattlin that aired on NPR on January 4, 2010. Ben is 47-years-old, has SMA — what he describes as a “neurological nuisance”, graduated from Harvard, is […]

News Story: Race against time: Family fights, hopes for cure for daughter's spinal muscular atrophy before it's too late

This story ran last week on the front page of the the Santa Barbara News-Press. Thank you so much Eric Bloise for writing such a great story and thank you to the Santa Barbara News-Press for continuing to support our cause! ===== Santa Barbara News-Press: Race against time: Family fights, hopes for cure for daughter’s […]