History of the Banner

Ten years ago Kyle Hahn could no longer speak clearly, play the guitar or walk on his own. ALS had changed his life and soon he would start an organization that would fight for PALS nation wide. In an ALS chat room he met his future fiance and co-founder Terry Frank. The two then formed an ALS organization called the ALS March of Faces. It is a collection of ALS patients, portraits grouped together to create a Banner that could be displayed at numerous events. The Banner first found itself outside the FDA headquarters in 1997 when shipments of an experimental medication called Myotrophin were stopped. Kyle was one of 160 patients using Myotrophin and contrary to skeptics he was convinced it was keeping him alive. The protest and the grand jury investigation of Myotrophin was all reported by the Washington Post in July 10, 2000. All of the FDA attention landed Kyle and Terry with a segment on "NBC Dateline" entitled "Borrowed Time a Diary". The Banner continued to gain steam and would find itself once again on a public forum program called "60 Minutes". One Sunday evening "60 Minutes" released a segment where Dr. Kevorkian assisted an ALS patient with a suicide in a motel room. Kyle and Terry were appalled by the story and wanted equal time to explain that ALS was more about surviving Life. The Faces of Courage Banner was taken to New York and placed on the sidewalk in front of the CBS studios. From this protest Mike Wallace would agreed to hear their story and traveled to Trenton Ohio with a film crew. The segment was called "Choosing Life".

From the efforts of ALS March of Faces, Terry and Kyle received the following award from the ALS Association.

*On Saturday, May 16, 1998 in honor of all their efforts to heighten the publics awareness of ALS, Terry Frank and Kyle Hahn were recognized with the Packman Award at the ALS Association 1998 Volunteer Leadership Conference in Washington, D.C.

The purpose of the Packman Award is to recognize individuals whose personal initiative and efforts have expanded awareness of ALS and ALSA and whose commitment has advanced the goals of the Association. Mike Havlicek, ALSA President presented the award to Terry and Kyle for their efforts in organizing the ALS March of Faces -- a patient driven advocacy movement that seeks to accelerate the process of finding a cure, through awareness and advocacy. The March of Faces banner is a powerful, visual statement that has helped to advance the concerns of people with ALS. Brad Grantham, a person with ALS from the Colorado Springs area, received the award in Terry and Kyle's absence.

This special award was named after Kevin Packman from Miami, Florida. Kevin was honored with the first Packman Award in 1992. At that time, Kevin was a student at the University of Texas. In an effort to increase awareness about ALS, Kevin surrounded the entire University with blue ribbons and persuaded his Florida Congressman to successfully lead an effort to have the U.S. Congress declare May as National ALS Awareness Month.

Congratulations Terry and Kyle!

*Kathy Yarmo, ALSA Director, Affiliate Patient Services printed 5/27/98

The Banner marches on still today but no longer includes the magic of Kyle's insight & vision. For ALS patients the message of the Banner is the same and the history is too valuable to ever forget. Through the years March of Faces has scaled back but the power and magic of the Banner is here to stay. Kyle was overtaken by ALS in 2003, he never surrendered, never gave up and his passing is a triumphant memorial of his courage and wisdom for all of us to follow. ALS March of Faces is an organization for PALS, controlled by PALS.