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.
Tags: Fighter Mom Friday, health, medical, orphan diseases
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.
