Dedication and Acknowledgements

MODULE DIRECTORY


“The most precious gift we can offer others is our presence.” -Thich Nhat Hanh


Dedication

This curriculum is focused on Duchenne Muscular Dystrophy and other forms of neuromuscular disease in honor of Mattie J.T. Stepanek, young poet and peacemaker who lived with a rare form of muscular dystrophy and all the other children around the world with neuromuscular conditions. Mattie’s messages of love, hope and peace have stirred the hearts and souls of millions worldwide. The author of 7 books, Mattie shared hope through his ‘HeartSongs’ poetry, and collaborated with Former President Jimmy Carter on an essay book, Just Peace. (http://www.mattieonline.com/).

Mattie died in 2004 just before his fourteenth birthday. Mattie’s mother, Jeni, carries Mattie’s message through her own writing, speaking and advocacy initiatives. Mattie’s legacy for a better world for all children has inspired our work to improve the lives of children, like Mattie, who live with life threatening neuromuscular diseases. Mattie’s generous spirit carries the work of this project beyond what we thought was possible.

Facing the Future
Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong.

by Mattie Stepanek

Acknowledgements

The Vision of Hope Project was supported by a grant (1 RC1NR011710-01) from the NIH, National Institute of Nursing Research and generous support from the Stavros Niarchos Foundation. One of the films in the series, “On the Edge,” received additional support from the Slomo and Cindy Silvian Foundation.

The films could not have been produced without the generous support and participation of the participants and crew:

Colgin and Rivers families
Tom Crawford
Nadia Lauer
Nigel Noble | Magic Lantern Productions
Ander Kazmeski
Ronan Killeen
Ann Collins
Pilar Haile Dmato

Vision of Hope logo created by: Charlotte M. Fremaux

Staff and Team Participants

Investigators
Cynda Hylton Rushton, PhD, RN, FAAN; Co-Principal Investigator
Gail Geller, ScD, MHS; Co-Principal Investigator
Mary Catherine Beach, MD, MPH; Co-Investigator
Carlton Haywood, Jr., PhD; Co-Investigator

Project Coordinators
Janet Pniewski, BSN
Jackie Williams Reade, PhD
Emily Jones, MA
Meredith Caldwell

Film Team
Raphe Reggie
Florentina Costache

Outreach Team
Alan Regenberg
Leah Ramsay

Vision of Hope Neuromuscular Advisory Board

Annie Kennedy, VP, Advocacy; Muscular Dystrophy Association
Ross Hays, MD; Children’s Hospital, Seattle
Benjamin Cumbo, student; George Washington University
Vance Taylor, Principal; Catalyst Partners, LLD

      

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