Fight SMA’s Fighter Mom Program was recently profiled in Exceptional Parent Magazine.  Fighter Mom provides support, advice and information for parents fighting to bring an end a disease or condition.  It was founded by Joe and Martha Slay, as they saw more and more parents trying to form nonprofits or raise money for research or awareness.  Here’s an excerpt from the article:

How can FighterMom assist parents of a child with SMA? The FighterMom program grew out of a decision by moms fighting one particular disease to share what they’d learned with any mom fighting any kind of health-related foe that has attacked their child. They believe that the “lessons and experiences—though taught in the battle against one disease—could have universal application. The specifics of one disease might be unique, but the trials, the emotional highs and lows, the dark days, and the victories could be those of any mom.”   Based on that belief, one of the best resources FighterMom has to offer is The FighterMom Manual. It was created as a “survival guide” of reference tools to assist mothers and others taking on the challenge of “doing something” when their daughter, son, grandchild, niece, or nephew has been diagnosed with SMA or any other life-threatening chronic disease. Information is provided that will help readers determine the resources they will need to take on the role of a fighter mom.

Read the entire article on the Exceptional Parents website.  Simple registration is required.

Tags: fight sma, fighter mom, fightermom, fightsma

 FB 17 [19:32m]: Play Now | Play in Popup | Download

This is the last in a series of four Fighting Back Podcast episodes that feature audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 17 features a seminar from Steve Eichenauer, a partner at lobbying firm Public Strategies Washington.  He discusses how Fighter Moms can talk to their legislative representatives to raise awareness of their cause and attempt to increase funding.

Note: Mr. Eichenauer refers during his talk to a one page information sheet that he handed out during the seminar.  That information sheet is available for download in .pdf format Fighter Mom Multimedia page.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

Tags: Fighter Mom Friday, fightermom, lobbying

 FB 16 [14:00m]: Play Now | Play in Popup | Download

This is the third in a series of Fighting Back Podcast episodes featuring audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 16 of Fighting Back features Dr. Alex MacKenzie, Director of the Children’s Hospital of Eastern Ontario Research Institute.  The audio for the episode was recorded during Dr. MacKenzie’s seminar.  He discusses the relationship between families and researchers, and how they can help each other.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

Tags: Fighter Mom Friday, fightermom, health, medical, researchers

 FB 15 [20:48m]: Play Now | Play in Popup | Download

This is the second in a series of Fighting Back Podcast episodes that includes the audio of seminars from Fighter Mom Friday. The workshop, held on May 9, 2008 in New York City, was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and a number of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 15 of Fighting Back Podcast features Louise Raymond, Senior Director of Global Corporate Responsibility for McGraw-Hill Companies. During her talk at Fighter Mom Friday, she discussed corporate giving and how to approach not only her companies, but other companies as well, to inquire about grants and funding for nonprofits.

Note: Ms. Raymond refers during her talk to a Powerpoint presentation. That presentation is available for download on the Fighter Mom Multimedia page.

Be sure to check back or subscribe to this podcast, so you don’t miss any of the upcoming episodes of Fighting Back!

To listen, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

Tags: corporate giving, Fighter Mom Friday, fightermom

Columbia University TV ran a great story during their student-run newscast about Fighter Mom Friday.  The Fighter Mom Friday event was on May 9, 2008 in New York City.  It was a day-long workshop for mothers (and others) fighting against serious or life threatening conditions affecting their children.

You can view the Columbia University TV newscast by clicking here.  The FighterMom Friday story is the last one in the newscast.  To save time, you can fast forward.

Tags: Fighter Mom Friday, fightermom, fightsma

An opinion article written by FightSMA co-founder Joe Slay appeared this week in the Richmond Times-Dispatch newspaper.  The op/ed used the Mother’s Day holiday to discuss the power of FighterMoms.

Read it here.

Tags: fightermom, Joe Slay, mothers day

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, click here.

Tags: fightermom, fightsma, Martha Slay, spinal muscular atrophy

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.

Tags: Fighter Mom Friday, fightermom, Toy Industry Foundation

Fighting Back Podcast … is back! This quarterly program provides information for and inspirational stories about people and families fighting against serious or incurable diseases or conditions. It’s produced by Fight SMA and FighterMom.

In this episode, host Steve Mullen talks with Audrey Gordon, President and Executive Director of the Progeria Research Foundation. Audrey and her sister, Dr. Leslie Gordon, founded PRF after Leslie’s son was diagnosed with the disease. Progeria is a disease that many have heard of, even if they don’t know its official name. It causes rapid aging in children, eventually leading to premature death. In Fighting Back Podcast Episode 12, Audrey tells us more about the disease, as well as how and why she’s fighting it.

Also in this episode of Fighting Back Podcast, we have information about the upcoming FighterMom Friday!

To listen to Fighting Back Podcast, you have several options. You can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

Thanks for listening!

Tags: fightermom, health, medical, podcast, progeria, science

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!

Tags: education, fight sma, Fighter Mom Friday, fightermom, fightsma, New York, Toy Industry Foundation, workshop