FB22 [8:25m]: Play Now | Play in Popup | Download

A Fighter Mom is someone who has been touched by tragedy, and gains the will to fight to help ensure no one else has to deal with the same pain.  In this episode of Fighting Back Podcast, we meet someone who fits that description to a “T”.

Kyra Oliver’s four-month-old son, Hayes, died in 2002.  The cause of death was given as Sudden Infant Death Syndrome, or SIDS.  Within days of his death, as Kyra was still fighting through the anguish, she founded the Hayes Foundation to raise awareness of SIDS.  In 2006, she launched a campaign to educate mothers and caregivers that the safest way for infants to sleep is on their backs.  The campaign began in Kyra’s home state of Virginia and is now spreading to other states.

Kyra continues her fight, and is now planning a fundraiser in her home city that combines her desire to educate about how to avoid SIDS and her love of competitive running.  The Capital 10-Miler is being held on Saturday, October 3.  For more information, visit http://www.rrrc.org.

To listen to our interview with Kyra, can use the Flash mp3 player above.  You can also 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.

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.

The Richmond Times-Dispatch this week profiled an effort that benefited FightSMA last month. Mondial Assistance, an international travel insurance and assistance provider with U.S. operations based near Richmond, Virginia, purchased December air time on WWBT-TV and produced spots featuring the women whose efforts improve the lives of others. One of those spots profiled FightSMA President Martha Slay. Here’s an excerpt from the Times-Dispatch article:

Martha Slay, founder and president of FightSMA, was selected for helping to raise funds to support research and treatment for Spinal Muscular Atrophy (SMA), the leading genetic killer of children under 2. Slay, of Richmond, has helped raise more than $6.5 million.

Founded as a nonprofit organization in 1991 after Slay’s oldest son, Andrew, was diagnosed with SMA at 14 months of age, FightSMA has 19 chapters in the U.S. and Canada. It supports SMA research projects at more than 40 universities and institutions in the U.S., Canada, United Kingdom, France and Italy. Most recently, Slay helped to create the “Fighter Mom” program that helps mothers deal with a variety of childhood health disorders.

You can read the entire article here.

Our very own Martha Slay was given a very nice honor a couple of months back, and we were remiss in posting it here as a way of congratulating her!

Richmond radio station WMXB (Mix 103.7) named Fight SMA President Martha Slay as its “Extraordinary Woman of the Month” back in July.  The award honors women in the area who are doing great things, and we think Martha certainly personifies that description.  Here’s a look at her nomination letter, which was written by Fight SMA’s Caroline Gibson:

Martha Slay is my boss, the founder and president of Fight SMA . Fight SMA is a 501c3 non-profit organization dedicated to finding a cure for Spinal Muscular Atrophy (SMA), the number one inherited killer of babies under three. Martha and her husband Joe founded Fight SMA in 1991 after receiving the diagnosis of their son, Andrew. Back then, it was known as Andrew’s Buddies. Now, Fight SMA boasts 19 chapters in the US and Canada and is in development talks to found Fight SMA Australia. In addition, Martha also created the Fighter Mom program, a program for ANY mom fighting ANY childhood disease or disorder. Using what she’s learned from the successes (and failures) of Fight SMA , Martha created a community and manual for these spectacular mothers, and gives them the tools they need to go to battle for their kids.

Martha is truly an extraordinary woman. She goes above and beyond the call of duty. She is a Fighter Mom, an advocate, and a hero. She is THE Extraordinary Woman!

Congratulations to Martha, and to all of the winners of this great award!

 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.

 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.

 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.

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.

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.

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.