Wednesday, September 19 , 2018, 12:35 pm | A Few Clouds 66º

 
 
 
 

Spinal Muscular Atrophy Nonprofit Group Gets an Online Assist

Gwendolyn Strong Foundation selected as Internet marketplace's 'Cause of the Month'

A local nonprofit organization dedicated to raising research funding and awareness in the fight against Spinal Muscular Atrophy received a boost this month when an online marketplace selected it as its October nonprofit “Cause of the Month.”

The Gwendolyn Strong Foundation was started by Victoria and Bill Strong of Santa Barbara after their then-6-month-old daughter, Gwendolyn, was diagnosed with the terminal disease. Now 2, Gwendolyn was born healthy but the degenerative nature of her condition inspired the Strongs to seek a cure and help other families grappling with Spinal Muscular Atrophy, the No. 1 genetic killer of young children.

Last month, their foundation launched ShopToEndSMA.com, a partnership with We-Care.com. Under the program, online shoppers, through the participation of hundreds of major Internet retailers, can donate a portion of their Web purchases to the Gwendolyn Strong Foundation. Earlier this month, We-Care.com selected the foundation as its October Cause of the Month.

“ShopToEndSMA.com and our partnership with We-Care.com is an example of how GSF is focused on harnessing the power of the Internet and social media to do our part in helping cure SMA once and for all,” Bill Strong said.

“The cure for SMA is truly within reach and each and every collective penny makes a difference in the timeline of these groundbreaking SMA-focused research programs.”

Spinal Muscular Atrophy is a terminal, degenerative disease that affects the voluntary muscles in infants and children, including their ability to walk, sit, stand, eat, breathe, and even swallow. Some 90 percent of children born with SMA die before age 2, according to FightSMA.org. Although the disease is not a household name, the gene responsible for it is unknowingly carried by 1 in 40 people, or nearly 10 million Americans. According to Strong, there currently is no treatment or cure, but SMA research researchers have said one is possible in the next five five years if provided the appropriate resources.

Click here for more information on the Gwendolyn Strong Foundation, or click here for more information on FightSMA.org.

Noozhawk publisher Bill Macfadyen can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk.

Support Noozhawk Today

You are an important ally in our mission to deliver clear, objective, high-quality professional news reporting for Santa Barbara, Goleta and the rest of Santa Barbara County. Join the Hawks Club today to help keep Noozhawk soaring.

We offer four membership levels: $5 a month, $10 a month, $25 a month or $1 a week. Payments can be made using a credit card, Apple Pay or Google Pay, or click here for information on recurring credit-card payments and a mailing address for checks.

Thank you for your vital support.

Become a Noozhawk Supporter

First name
Last name
Email
Select your monthly membership
Or choose an annual membership
×

Payment Information

Membership Subscription

You are enrolling in . Thank you for joining the Hawks Club.

Payment Method

Pay by Credit Card:

Mastercard, Visa, American Express, Discover
One click only, please!

Pay with Apple Pay or Google Pay:

Noozhawk partners with Stripe to provide secure invoicing and payments processing.
You may cancel your membership at any time by sending an email to .(JavaScript must be enabled to view this email address).

  • Ask
  • Vote
  • Investigate
  • Answer

Noozhawk Asks: What’s Your Question?

Welcome to Noozhawk Asks, a new feature in which you ask the questions, you help decide what Noozhawk investigates, and you work with us to find the answers.

Here’s how it works: You share your questions with us in the nearby box. In some cases, we may work with you to find the answers. In others, we may ask you to vote on your top choices to help us narrow the scope. And we’ll be regularly asking you for your feedback on a specific issue or topic.

We also expect to work together with the reader who asked the winning questions to find the answer together. Noozhawk’s objective is to come at questions from a place of curiosity and openness, and we believe a transparent collaboration is the key to achieve it.

The results of our investigation will be published here in this Noozhawk Asks section. Once or twice a month, we plan to do a review of what was asked and answered.

Thanks for asking!

Click Here to Get Started >

Reader Comments

Noozhawk is no longer accepting reader comments on our articles. Click here for the announcement. Readers are instead invited to submit letters to the editor by emailing them to [email protected]. Please provide your full name and community, as well as contact information for verification purposes only.

Daily Noozhawk

Subscribe to Noozhawk's A.M. Report, our free e-Bulletin sent out every day at 4:15 a.m. with Noozhawk's top stories, hand-picked by the editors.

Sign Up Now >