Along with her daughter Megan, FightSMA president Martha Slay is featured on the cover and inside the May issue of Richmond Parents Monthly. With this month’s edition focusing on Mother’s Day, the magazine highlights Martha’s efforts to raise research funding and awareness of Spinal Muscular Atrophy (SMA) and how this work lead to the creation of FightSMA’s Fighter Mom program.

From the article:

Twenty-two years ago, Martha Slay became a mom. And about 21 years ago, she became a Fighter Mom.

Although those weren’t the words she used at the time, that’s when her son Andrew was diagnosed with spinal muscular atrophy, or SMA, the number one genetic killer of babies in the U.S. Martha felt compelled to do something. That something was Andrew’s Buddies, an organization she and her husband Joe founded in 1991 to raise money for SMA research and spread awareness of the disease. Over the past 17 years, the organization has evolved into FightSMA, with chapters across the county that have raised more than $5 million for research.

FightSMA also supports parents whose children have been diagnosed with SMA, helping them becomes advocates—fighters—for their children.

About three years ago, recognizing that mothers of children with other diseases or difficulties were contacting FightSMA for advice and encouragement, the organization created the “Fighter Mom” program.

“We were blown away with what moms were sharing” about becoming activists, said Martha. That collective wisdom is gathered into the Fighter Mom manual. Meant to help parents harness their passion to protect their children, the book is full of nuts-and-bolts advice about raising funds, working with researchers and talking to congresspeople. More information and a link to order the free manual is at www.fightermom.org.

The read the entire article, visit the Richmond Parents Monthly website.

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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 Mom™ 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 FightSMA. “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 Mom™ 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.

To learn more and to register for Fighter Mom Friday, click here.

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An article about Fighter Mom Friday appeared this week on Playthings.com, a toy industry website. The piece discussed the Toy Industry Foundation’s generous grant of $35,000 to help fund the Fighter Mom Friday event.

The grant and event sponsorship is the first time that the Toy Industry Foundation has worked with Fight SMA. The workshop will provide parents of children with SMA “a ‘fighting’ attitude as well as the motivation and tools to more actively advocate for their children,” according to TIF.

“The Toy Industry Foundation is delighted to work with Fight SMA to sponsor an event that provides new insights to parents of children with special needs,” said Jean Butler, executive director of the Toy Industry Foundation. “Both organizations 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.”

To read more, visit the Playthings.com website.

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Publicity works. That’s the lesson from the story of an SMA family that was turned down for a power wheelchair by their insurance company.

Realizing their son would never walk, the parents of three-year-old Liam Russell, who has Spinal Muscular Atrophy Type II, filed a claim with their insurance company, Assurant, for a power chair. Assurant, however, refused to pay for even a portion of the chair, saying their policies don’t cover electric wheelchairs.

Liam’s parents did two things in response to this, showing they’re true “Fighter Parents” — first, they started a fundraising campaign for donations to buy the chair themselves. They also appeared on national television to tell their story. ABC’s Good Morning America did a story on the family’s predicament and their insurance company’s response.

Lo and behold, Assurant responded after the airing of the story that they were reviewing their policies regarding power chairs. Shortly thereafter, they announced that they would in fact provide coverage for power chairs for new policy holders.

The Russell family will not need Assurant’s help. Their fundraising efforts brought them enough money to purchase Liam’s chair. However, their publicity efforts will help future families in similar situations.

To see video from the GMA story (and Liam, who is adorable), please visit the ABC News video site.

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and

present

Fighter Mom™ Friday
May 9, 2008
8:00 am - 5:00 pm
New York Palace Hotel
New York, New York

FightSMA and the Toy Industry Foundation are pleased to announce Fighter Mom™ Friday, May 9, 2008. The inaugural, day-long workshop will take place at the breathtaking New York Palace Hotel in Midtown Manhattan.

Fighter Mom™ Friday is a celebration for all mothers (and others), whose children face any kind of disease, challenge or disability. It will be a day that provides a special service to moms and other caregivers who need tools to become truly proactive for their children. To kick off Mother’s Day weekend, FightSMA and the Toy Industry Foundation are honored to provide these special women with a day of their very own — a day to honor the Fighter Mom™. This day will be celebrated year after year.

The workshop will be a fun, educational and productive day. FightSMA and the Toy Industry Foundation have collaborated to provide a dynamic agenda for the day, including presentations, a celebrity guest speaker, panelists and toy demonstrations.

Please check here for periodic updates on this exciting event!

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We’re very excited around here this week, because the FighterMom program was profiled in an article in USA Today, the one of the nation’s largest newspapers! The story was a sidebar to an article about Shea Megale, a little girl from Northern Virginia whose stories about her assistance dog will be published and sold at FAO Schwarz.

Here’s an excerpt from the sidebar about the FighterMom program:

Martha Slay stepped up to fight for her son when he was diagnosed with spinal muscular atrophy (SMA) in 1987. Now she spreads her lessons learned to other mothers who want to fight for their children.

Fighter Mom, a program Slay started in 2006 almost 20 years after founding FightSMA with her husband, Joseph, is designed to help “mothers and others” who want to help find a treatment or a cure for their child’s disease.

To read the entire article, and learn about Shea Megale’s stories, read the entire article on the USA Today website.

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 Fighting Back Episode 10 [11:30m]: Download

Welcome to episode 10 of Fighting Back, the podcast that features inspirational stories of people and families fighting serious or incurable diseases. I’m thrilled to reach this milestone episode, and we’ve found another true FighterMom, whose story is truly inspirational.

16-year-old Kelly Sperry was diagnosed with Parry Romberg Syndrome, a disease that causes a wasting of one side of the face, among other things. Not only is there no cure, doctor’s aren’t completely sure what causes it. Kelly’s parents, Donna and Jay, decided that they wanted to help provide support for other victims of this rare disorder. They founded the Parry Romberg Foundation.

In episode 10, host Steve Mullen interviews Donna Sperry. We hear more about the disease and how Donna is Fighting Back.

Links mentioned in this episode:
Parry Romberg Foundation (www.parryrombergfoundation.org)
Bully Police USA (www.bullypolice.org)

To hear Episode 10 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

To discuss this, or any, episode of Fighting Back, head to the Fighting Back Podcast Forum on the FighterMom Community.  Or, leave us a voice mail message at our new voicemail hotline number – 206-222-1903. You can also leave a message in the form of a comment on this blog as well.

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