Thousands Use Twitter to Support Spinal Muscular Atrophy Research

Posted: September 10th, 2009 | By: Steve Mullen | Filed under: Uncategorized | No Comments
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New Application Helps Twitter Users Contact Legislators about SMA

(Santa Barbara, CA) – Millions of people ‘Tweet’ every day, and Bill Strong knew there had to be a way to harness all of that online talk to help end spinal muscular atrophy, a disease that is affecting him very personally. With a Twitter application called ‘Tweet for a Cure’ and the help of thousands of Twitter users, he’s making progress in his quest to find a cure.

gwendolyn

Bill and Victoria Strong’s daughter, Gwendolyn (seen to the right), was diagnosed with spinal muscular atrophy (SMA) at the age of six months.  SMA is a neuromuscular disease that causes weakness and wasting of the muscles.  In the most severe cases, it can rob its victims of the ability to crawl, sit, walk, breathe, eat, talk, or even smile.  SMA is the leading genetic killer of children under two.

Not long after the SMA diagnosis, Bill and Victoria founded the Gwendolyn Strong Foundation to raise awareness of and money for SMA research.  Bill also serves on the board of directors of Fight SMA, a larger organization with a mission of strategically advancing research for SMA.

Bill has harnessed the power of the Internet and social media for several campaigns that further his cause of raising much needed awareness of SMA.  His latest effort is “Tweet for a Cure”.  The Twitter application helps users send a “tweet” to their local legislators.  The message asks the legislators to support the SMA Treatment Acceleration Act.  The proposed legislation in the United States, written and backed by multiple SMA organizations, would help to clear the way for researchers to find a cure for the disease.  Within one month of its launch, more than 2,600 people utilized “Tweet for a Cure”, reaching nearly two million Twitter users.

“Using social media, such as Twitter, Facebook, and even online petitions, organizations like ours can reach large numbers of people with less effort than it took just a few years ago,” said Strong.  “We’re grateful for the individuals who have used ‘Tweet for a Cure’ and for those who have signed our online petition, and hope that they continue to support our efforts to help end spinal muscular atrophy.“

Bill’s online petition, which asks that legislators support the SMA Treatment Acceleration Act, can be found at http://www.petitiontocuresma.com.  Since being created in July of 2008, it has gathered approximately 70-thousand digital signatures.

To find the “Tweet for a Cure” application, go to http://www.endsma.org/twitter.  To learn about the Gwendolyn Strong Foundation, go to http://www.endsma.org.  For more about spinal muscular atrophy, go to Fight SMA’s website, at http://www.fightsma.org.

About Fight SMA
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. The latest SMA news and research information is available at Fight SMA’s Spinal Muscular Atrophy Blog, at http://www.fightsma/blog.

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This release also found at:
Online PR News: Thousands Voice Support for Spinal Muscular Atrophy Research with “Tweet for a Cure”
PRLog: New Application Helps Twitter Users Contact Legislators about Spinal Muscular Atrophy

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New Fight SMA Web Video Updates the State of Spinal Muscular Atrophy Research

Posted: June 16th, 2009 | By: Steve Mullen | Filed under: Uncategorized | No Comments
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Fight SMA Publishes Web Video from 2009 Spinal Muscular Atrophy Conference

Richmond, VA (June 16, 2009) – The Fight SMA 2009 Annual Spinal Muscular Atrophy Conference, The Good Fight, featured many firsts.  One of the most important to SMA families was the first-ever webcast of the “Friends and Family” portion of the conference.  Now, Fight SMA is announcing that the video from that webcast is available for online viewing and download.

Founded in 1991 in Richmond, Virginia, Fight SMA is an international non-profit organization dedicated to finding a treatment or cure for Spinal Muscular Atrophy (SMA), the leading inherited killer of children under two.  The neuromuscular disease affects the victim’s motor neurons, causing muscle atrophy, loss of strength, and disability.  The majority of children who are born with SMA die prematurely due to respiratory complications.

The 2009 Fight SMA Annual Conference, held in late April, included events for both researchers and SMA families.  The webcast of the Families and Friends portion of the conference was made available free of charge, and allowed those who were unable to travel to the event location in Washington D.C. the opportunity to learn from and interact with the presenters.  Utilizing the webcast were 30 individuals and families from 13 states in the U.S. and a total of four countries.  The response from the webcast participants was overwhelmingly positive.

“We were thrilled with the success of our first conference webcast, and we’re very excited to be able to make this video available,” said Fight SMA President Martha Slay.  “Families facing SMA need all of the information they can get about research, and the scientists who attended our conference are some of the best in the world.”

The video features the “Basic Science Update”, one of two panel discussions during the Families and Friends Conference.  Fight SMA Science Director Dr. Chris Lorson from the University of Missouri in Columbia led the discussion.  He presented the most current information available about the search for an SMA cure.

To view and download the video, please visit the 2009 Spinal Muscular Atrophy Conference page on the Fight SMA website.  The page can be accessed via a link on the front page of the Fight SMA site, or via this link: http://www.fightsma.org/index.php?annual_meeting_2009 .

About Fight SMA
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease.  For more information on spinal muscular atrophy and Fight SMA, please visit http://www.fightsma.org.  The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog, at http://www.fightsma/blog.

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First Annual Fighter Mom Workshop

Posted: April 5th, 2008 | By: Steve Mullen | Filed under: Uncategorized | Comments Off
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First Annual Fighter MomTM Workshop to Support Mothers (and Others) Fighting Children’s Diseases

NEW YORK, New York – A special day-long workshop for mothers fighting diseases and health challenges that face their children will be held on Friday, May 9, 2008, from 8 a.m. to 5 p.m., at the New York Palace Hotel in New York City.

The “Fighter MomTM Friday” workshop is presented by Fighter Mom, a program of the nonprofit group, Fight SMA and sponsored by the Toy Industry Foundation.

Guest speaker for the day will be award-winning journalist and writer Catherine Crier, who will speak on leadership, women’s empowerment, and hope for life’s tough battles.

The workshop will provide parents who attend with techniques and tools to be advocates on behalf of their children and to work effectively to defeat the diseases and health conditions that have targeted their children.

“The information to be shared is based on more than 17 years of the experiences of mothers fighting against one particular childhood disease – spinal muscular atrophy (SMA),” said Martha Slay, event organizer and president of Richmond, VA-based Fight SMA. “Through the Fighter Mom program we can help any mom fighting any childhood disease be as effective a champion as possible. We also hope to help this special woman take good care of herself!”

“The Toy Industry Foundation is thrilled to sponsor an event like this with FightSMA to provide new insights about the value of play to parents of children with special needs,” said Jean Butler, executive director of the Toy Industry Foundation. “We have gathered experts from relevant fields to serve as resources to parents who want to do what’s best for their child and may not know exactly what that is.”

A special aspect of the day will be presentations and a discussion of the Toy Industry Foundation’s publication, “Let’s Play: A Guide to Toys for Children with Special Needs.” Toy Industry Foundation panelists will explore play and its benefits to children confined by physical and developmental barriers.

The workshop will cover such topics as developing an organizational and fundraising strategy, special events, motivating volunteers, working with scientists and doctors, lobbying Congress, and generating publicity.

Panelists for the day will include:

-Steve Eichenauer, Partner, Public Strategies Washington

-Louise Raymond, Senior Director of Global Corporate Responsibility, McGraw-Hill Companies

-Alex Mackenzie, M.D., Ph.D, Director of the Children’s Hospital of Eastern Ontario Research Institute

-Janice Schacter, chair of the Hearing Access Program at the Alexander Graham Bell Association for the Deaf and Hard of Hearing

-Diane Goetz, Director of Patient and Professional Advocacy, PTC Therapeutics

-Nancy Jeffrey, Senior Editor, People magazine

-Ellen Metrick, Toy Specialist, National Lekotek Center

-Dr. Steven Kanor, Founder and President, Enabling Devices

-Amy Jaffe Barzach, Founder, Boundless Programs; Author, Accidental Courage, Boundless Dreams

The Fighter MomTM manual and web site (www.fightermom.org) provide “real-world” information to help mothers (and others) not only care for their child, but to “go on the offensive” and work to eradicate the disease itself. The Fighter Mom program has been recognized by CNN and USA Today, among other media.

Fighter Mom is a program of Fight SMA, a nonprofit corporation based in Richmond, VA with chapters in 19 cities in the U.S. and Canada. Its mission is to strategically accelerate research for a treatment or cure for spinal muscular atrophy (SMA), the leading genetic cause of infant death.

The Toy Industry Foundation is a nonprofit organization whose mission is to bring joy, happiness and comfort to children in need through toys and play. While other organizations provide food, shelter and support services to children and their families, TIF sees to it that these children have toys and opportunities to play in an attempt to restore both fun and a sense of normalcy to their lives. The Foundation currently fulfills its mission through core programs including public education, The Toy Bank and PLAY HELPS. For more information, visit www.toyindustryfoundation.org.

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