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.

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.

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.

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!