FighterMom Manual - Disease Advocacy Instructions
The Fighter Mom™ manual is a guide and reference tool to help mothers--and others--take on the challenge of "doing something" after they've discovered their child, grandchild, niece, nephew or special child in their life--is battling any chronic and possibly life-threatening disease.
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Real-world advice based on the experiences of FightSMA, a 15-year-old nonprofit that has raised millions for SMA research, spawned chapters across the country and increased awareness of the leading genetic cause of infant death. From Section One: The Organization Behind the Fighter Mom™ program “The Fighter Mom™ Program grew out of a decision by moms fighting one particular childhood disease--spinal muscular atrophy--to share what they'd learned with any mom fighting any kind of health-related enemy that has attacked her child. “Their belief was 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. “In that sense, spinal muscular atrophy provides an invaluable working laboratory from which many--mothers and others--can learn.” |
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Information to help readers determine the resources--both internal and external--they will need to take on the role of a Fighter Mom. From Section Two: Determine If You‘re Right for the Job “It may well be that now, or in the near future, you will begin to feel, as many others have, that you need to ‘do something.’ One Fighter Mom describes this as ‘the power decision.’ … It will be a little easier if you can answer ‘yes’ to at least one of these three questions: 1. Do you have someone you can really count on? |
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A guide to developing a long-term strategy to help your organization achieve its goals and expand its efforts. From Section Three: Create and Stick to a Strategy “The FightSMA board of directors put itself through a strategic planning process, facilitated by an outside consultant. This was after we had been in existence for about nine years. The purpose was to try to solve some organizational issues: Are we working on the right stuff? Do we have the right kind of committees? Are we making the progress we want? Can we take some of the weight off of the exhausted Fighter Mom leading the organization? What are our strengths? What are our weaknesses? How can we do more with what we've got? Where should we do more? Where should we do less? During a series of four meetings, we hammered out an Objective and a Strategy.” |
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A look at the groups--volunteers, media, government, corporations, foundations, and others--you will need. Section Four: Multiply Your Efforts will give you advice on establishing a board, getting the most out of volunteers, understanding the media, working with the government and soliciting corporations and foundations for support.
The manual also includes: |
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Profiles of Fighter Moms in communities across the country who, while dealing with the challenge of caring for critically ill children, have also managed to raise funds in economically strapped communities, work with doctors and researchers to improve treatment for children with SMA, coax reluctant reporters to write stories about the disease and convince busy and over-committed corporate leaders to support their fundraisers. |
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Sample materials including solicitation letters to corporations, planning calendars and checklists. |
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A list of “55 for Fighting” ideas and tips that will help you save time, money and your sanity. |
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Information on outside resources including web sites, books and support organizations to help you get started. |
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