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Posts tagged with: News

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

July 20, 2011 by Bill Strong

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...

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Little Star and Gwendolyn in Santa Barbara News-Press

April 13, 2011 by Victoria Strong

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...

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Check out SMAHeadlines.com | SMA news in one place.

March 16, 2011 by Bill Strong

A few months ago the Gwendolyn Strong Foundation (GSF) launched an extremely simple project. It's called SMAHeadlines.com 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...

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

October 02, 2010 by Bill Strong
NPR - California Report

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...

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Gwendolyn and SMA on NPR!

September 30, 2010 by Victoria Strong

We are beyond excited! NPR or National Public Radio's highly respectedCalifornia 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 inSanta Barbara and...

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New York Times: Cap Lifts, and So Do Spirits

September 23, 2010 by Bill Strong

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...

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

March 06, 2010 by Bill Strong
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...


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PerezHilton.com Raises Awareness Of SMA, GSF

January 25, 2010 by Bill Strong
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...
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"To One Of The Lucky Ones, The New Year Means More"—

January 05, 2010 by Bill Strong


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 a...
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News Story: Race against time: Family fights, hopes for cure for

December 28, 2009 by Bill Strong
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!

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Santa Barbara News-Press: Race against time: Family fights, hopes for...
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News Story: Local Family Continues Battle Against SMA

December 27, 2009 by Bill Strong

Thanks so much for the continued support Daily Sound!

The story is below the image or click here or on the image below to read the story on the Daily Sound website...

As their surname implies, the Strongs are...
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PRESS RELEASE: Gwendolyn Strong Foundation Voted Top 100 Charity,

December 18, 2009 by Bill Strong
We are so excited about being voted by Facebook users as one of the top 100 charities of more than 500,000 nonprofits through the $5M Chase Community Giving campaign. We're on to round two with a chance at winning up to $1 Million for SMA awareness and research -- that would be unbelievable! We...
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KHFR 89.7 FM Interview About SMA and the Gwendolyn Strong Foundation

October 28, 2009 by Victoria Strong
I'm so proud of Bill. He was invited to do a 15 minute radio interview about SMA and he did great! The "Focus on Issues" program aired on Saturday, October 24th on KHFR 89.7 FM at 12:14 am, 6:44 am, 12:44 pm and 5:14 pm. You can listen to it here:

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GSF's ShopToEndSMA.com Selected as Cause of the Month by We-Care.com

October 19, 2009 by Victoria Strong
Shop To End SMA

We are so, so excited! The Gwendolyn Strong Foundation and our ShopToEndSMA.com project was selected as "Cause of the Month" by We-Care.com. That's more SMA awareness. That's more SMA name recognition. That's more dollars going towards a cure for this cruel disease.
"It's rare to find an...
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KEYT-3 (ABC) "In Focus": Gwendolyn, SMA, and Gwendolyn

July 27, 2009 by Bill Strong

Thank you KEYT-3 (ABC), Santa Barbara, CA and Mike Klan for featuring Gwendolyn, SMA, Sponsor-A-Mile, and the Gwendolyn Strong Foundation on your special "In Focus" Sunday night program. We appreciate your support! Twelve minutes about SMA -- awesome!

Watch HERE
 

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KEYT-3 (ABC) Santa Barbara, CA: SMA on "In Focus" special,

July 24, 2009 by Bill Strong
This morning we taped a segment with Mike Klan of KEYT-3 (ABC) for the "In Focus" special that airs every Sunday evening. The segment will include information on Spinal Muscular Atrophy (SMA), our trip, Sponsor-A-Mile, the Gwendolyn Strong Foundation, and PetitionToCureSMA.com.

Thank you Mike for...
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Publicist Extraordinaire

July 17, 2009 by Victoria Strong
Raising awareness about SMA is paramount to us, believing that through awareness a cure becomes infinitely more attainable. So, when we embarked on this trip, we knew we wanted and needed to parlay it into coverage of this leading infant killer. But, garnering media attention is not always easy....
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Valley Morning Star: Family on 5,000-mile journey to raise awareness

July 15, 2009 by Bill Strong

Thank you Gabriel Saldana and Valley Morning Star for helping us raise much needed awareness about Spinal Muscular Atrophy (SMA), the leading genetic killer of young children.

Click here or on the image below to read Gabriel's story.

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Island Breeze: Journey of Love Stops in SPI

July 15, 2009 by Bill Strong


Thank you to the Island Breeze for running a story on SMA and Sponsor-A-Mile! We appreciate it.

Click here to read the story.

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Care2.com: What is Spinal Muscular Atrophy (SMA)?

July 15, 2009 by Bill Strong

Read our second guest blog post on Care2.com. Click here to read the blog post.
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