Families with MS
Finding Our Way Weblog Families with MS Boston Cure Project

Finding Our Way Documentary

Our initial DVD production is for newly diagnosed children and teens with MS and their families. It is entitled “Finding Our Way—A Guide for Newly Diagnosed Families with Multiple Sclerosis” (FOW).

We now know newly diagnosed adults with MS - the vast majority of newly diagnosed MS patients - are looking for an FOW of their own. Another version is now in the works.

Finding Our Way has three sections:

Documentary
Profiles of five families including teens and adults diagnosed as teenagers.

MS Allies
Interviews and advice from neurologists, researchers, nurses, complementary and alternative medicine providers, wellness educators and trainers, financial planners and legal advisors

Key Issues in MS
Art Mellor answers frequently asked questions about major issues including disease modifying treatments, the state of MS research and drug development.

 

How Did This Get Started?

This documentary film project was inspired by NBC's Today Show and a story developed by Robert Bazell, chief science correspondent. In February 2003,The Today Show ran his story on pediatric Multiiple Sclerosis.

The National MS Society assisted him by assembling four New England families for a group discussion, parts of which were used in the story. That’s when we got involved. We were among the families.

Meeting in Manchester, New Hampshire, eight parents and four teens with MS – all 17 year old girls – discovered that each of us has had very similar challenges. Among them was isolation. This was the first time any of us had met another family living with MS. Even after five years!

As we talked with each other, and later with the folks at the Boston Cure Project, the idea of making a documentary popped up. Something to reassure newly diagnosed families that:

  • This is NOT the worst case scenario
  • Not every moment is an emergency
  • We learn to adapt
  • Focusing on a full life, not MS, helps us stay healthier

George Peabody, parent of Anna (17), and his sister and filmmaker Martha Swetzoff are making FOW now. Follow their progress on their weblog.

Words of Support for the
Finding Our Way Documentary

"Having a video program to educate newly diagnosed families would fill a large gap...If we have an educational program that a person can look at over and over again to get the main messages of what MS is all about and its care, it is tremendously beneficial."
R. Philip Kinkel, MD
Director, Multiple Sclerosis Center
Beth Israel Deaconess Medical Center Assistant Professor of Neurology, Harvard Medical School

"This would have meant the world to us as a family when our son Joshua (now 17) was diagnosed. We struggled so hard in the beginning years of his diagnosis. This project is a gift from the heart and a blessing."
Sandi Harris, Parent

"The most important function of this project is to reduce a newly diagnosed patient's fear. Patients are understandably terrified-they expect to see themselves permanently and significantly disabled in a short time. And that's not the case for most, particularly early on. This project will help families understand the reality of the disease. And, since it's hard to retain what you hear at diagnosis when you are frightened and anxious, Finding Our Way will help give families the information they need when they need to know it. And that helps me as a physician in caring for my patients. "
Timothy Vartanian, MD, PhD
Assistant Professor of Neurology, Harvard Medical School
Senior Associate Neurologist, Beth Israel Deaconess Medical Center

"I think back to my 13 year old son Dustin's (now 17) early presentations and then diagnoses of MS and how devastating it was to have it confirmed. Our feelings of fear and unknown expectations were overwhelming…It would have been perfect to have an interactive program such as Finding Your Way on DVD to explore the possibilities for managing pediatric MS and to have the up to date news on MS treatment methods and progress with research efforts."
Ron Amodeon, Parent, Pennsylvania

"Our first two years of living with the grieving and anxiety over our teenage daughter's MS and frequent relapses, was a lonely, exhausting struggle. Your program would have helped give us hope, connection and answers when we needed it the most: during those first days and months after diagnosis."
Nancy Kaplan, Parent, Massachusetts

"Since MS is generally an adult-onset disease, we have not had the opportunity to interact with other parents who are supporting children with MS. We vividly recall our first days with the disease and the sense of fear and anxiety over what would happen to Jenny. The project that you are working on is sorely needed."
Bill and Cheryl Travis, Parent, Texas


"I received your email about creating a DVD on MS. I wanted to respond and encourage you in your efforts. My daughter is also 17…My ongoing fear: The future and all the what if's (such as) "what if we spend all our money on college and then need it for lifecare?"
Marilyn Shiwarski, Parent, New York