This page is in honour of
Kyle Hahn
a true advocate for ALS
you are missed my friend.
We will take that train trip someday!
"We will not be hidden and left to die ever again!
Get used to it.... "
Kyle George Hahn
I had the good fortune to attend the ALS Atlantic Conference in Moncton, New Brunswick on November 7 and 8th, 2008. I attended to try and market the ALS March of Faces project as much as possible, simply by presenting what we can do to raise awareness of ALS. In attendance there were representatives from New Brunswick, Nova Scotia, Prince Edward Island, Newfoundland/Labrador and ALS Canada. In total there were well over 100 people in attendance with quite a few PALS taking part. Representatives from each of the Societies, ALS Canada, Researchers, people from the medical community as well as CALS took part. At this time I would like to thank everyone in attendance for their interest in the ALS March of Faces. I would especially like to thank Shirley Smallwood for being a good friend and tour guide, it was good to see Shirley again as well as her mother and Ray. It was also good to see the Provincial ALS Societies Executive Directors as well as the volunteers, many of whom I knew from previous meetings.
I think I took away from the Conference a better understanding of what we have to do in order to get the “awareness” word out. Most importantly, I feel, we have to reach out and make contact with all of our PALS. Some who were at the Conference really had no idea that there was such a thing as The ALS March of Faces, let alone exactly what we do. This has to change. We have taken steps in the right direction by placing brochures in all the ALS clinics across Canada. What this will do, I hope, is get the permission forms into the hands of PALS right at the source. I must say that, personally, I was reluctant to go on the ALS March of Faces originally until I observed the power of the Banners in action. That being said, I do believe that by going to these Conferences and showing exactly what we can do to help raise awareness, such as the use of the Banners, Posters and PowerPoint shows we will get more of the Provincial ALS Societies on board and on the same page.
I had the opportunity as well to give a presentation about the ALS March of Faces/Faces of Courage explaining what we are doing now and what we plan on doing in the future. Taking our World Banners on tour seems to be well received not only by some of the Provincial Societies but ALS Canada as well. I also put out a request for volunteers to help us with our committees but with these things you never quite know who will step forward, if anyone. The information is available but what people do with it is totally up to them and totally out of our control. I do have to say that a good many permission forms and brochures were handed out at the Conference. Hopefully this will result in more PALS taking part but only time will tell on that one.
I think we can expand and let our presence be known at more ALS functions, not only in Canada but in the US as well. We have to get our presence to more of these functions such as this Conference, walk training sessions, golf tournaments, any other events and especially the Walks for ALS. If the particular area/venue does not have a relevant Banner(s) then we do have to find some and take them no matter where they are from. We have to do this with a camera in one hand and a permission form in the other! I firmly believe that we are taking steps in the right direction and now is the time to fine tune it and make sure that our jobs are done to the very best of our ability.
In closing I will share with you some of the pictures taken at the Conference.
Enjoy!
Best viewed in full-screen (F11)
George Goodwin
The ALS March of Faces is embarking on a new and different strategy and we need your help. For the first time ever we have established committees to look after different aspects of operating our nonprofit organization. There are two ways in which you can now help us achieve our goal.
1. We are asking for PALS to sit as volunteers on the various committees that have been organized. We are trying to get each PALS to bring two new PALS to the ALS March of Faces banners. Hopefully this will create a chain reaction that will increase the World Banners significantly. As everyone knows there is no charge for participating in the ALS March of Faces program and this is a way to give back.
2. The ALS March of Faces Banners are not limited to North America but are open to anyone around the World. By having representation everywhere in the world we are truly sending a statement that we are serious about finding a cure for this disease. You will find a permission form below that you can send back via e-mail with the picture attached.
Our Mission Statement and Board of Directors are listed below but with just 11 people it will be difficult to achieve our Mission. Your help would assist us and be greatly appreciated. For information on how you can help please contact me at: ALShelp@ALSindependence.com and you will then be asked to confirm your message… this is to prevent the overload of spam that I receive at this address.
George Goodwin
President and Canadian Coordinator
The ALS March of Faces
For a very easy submission form please follow the link below:
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WHO ARE WE?
The ALS March of Faces is a patient/caregiver governed and operated non-profit
organization, dedicated to heightening public awareness of ALS, and advocating
on issues that concern and/or benefit PALS (People with ALS)
THE BANNER
The ALS March of Faces Banner is a pictorial display which represents the
courageous men and women, who through no fault of their own, have been stricken
with the brutal disease known as Amyotrophic Lateral Sclerosis (ALS) or Lou
Gehrig's Disease.
Those who truly battle every day of their lives to live with ALS, and want to
continue to live to see a cure, and the PALS (People with ALS) who have fought
gallantly in the past, are the Faces of Courage that are represented on the ALS
March of Faces Banner.
OUR MISSION
The mission of the ALS March of Faces is to provide a resource where PALS, their
caregivers, families and friends, can empower themselves to better their lives
and help accelerate the process of finding a cure, through ALS Education,
Awareness, Advocacy and Fundraising Events, so that The Banner will never have
to be displayed again.
Our Board
President, George Goodwin, PALS (Ontario, Canada)
Limb onset symptoms in 1989; diagnosed three years later. The disease has
progressed very slowly but is in a power chair at this time.
One accomplishment most proud of is, bringing the ALS March of Faces program to
Canada. In a little under five years, managed to collect in excess of 770
people from across Canada and have made up in excess of 80 Banners from each of
the 10 provinces.
Website: http://www.alsindependence.com
EMAIL: george.goodwin@sympatico.ca
*********
Vice President, Ken Patterson, Sr. (Florida)
Diagnosed with ALS in November 2006 after over a year of symptoms and tests. Not
long after his diagnosis he resolved to continue being myself, a fighter and
loud mouth, instead of doing what so many people with a terminal illness do,
crawl in a hole to die. Married with 3 kids. He was working at the Kennedy Space
Center as a Safety Engineer responsible for the safety of the police and fire
departments. He spent 10 years as a firefighter in Northeast Florida. An avid
baseball fan, his favorite team is the Red Sox. He also likes football, the
Giants and the Jaguars are my teams. He has a Bachelors degree in Occupational
Safety and Health, an Associate’s degree in both Fire Science and Emergency
Administration and Management.
********
Assistant Secretary, Phyllis van Horn (Ohio)
Primary caregiver for my twin brother Dennis, diagnosed with ALS in 1997 at age
47. My sister Maxine succumbed to the disease in April 2004 at age 65
Instrumental in forming the ALS Family Support Group of Ohio, Inc. The
organization is incorporated in the state of Ohio and has a federal 501(C)3 tax
exempt status. Named Director by its board of directors in February 2005 at the
time of its incorporation. Facilitator of the monthly support group meetings.
In 2007 named “Home Town Hero” by the Muskingum Lakes Chapter of the American
Red Cross for her work with the ALS Family Support Group and honored to win the
Lucille Nussdorfer “Woman of the Year” award sponsored by the Dennison Depot.
Both of these awards gained much publicity and helped to raise awareness of ALS.
As a result of the afore mentioned awards she was recognized by the Ohio Senate,
the Ohio House of Representatives and by Congressman Zach Space from the United
States House of Representatives.
Website:
http://www.alsfamilysupportgroup.com
EMAIL: werehere4u@roadrunner.com
********
Trustee, Marvin Streich (Canada)
Primary caregiver for wife Mary, diagnosed with ALS in 1996, until her passing
at home as she wished one year later.
Marvin has been a volunteer for the ALS Society of Ontario and has served on
both the Advocacy Committee and the Support Services Committee of the Society.
He also has served as President of the local Chapter in Sudbury, Ontario and has
participated in several Walks for ALS over the years.
EMAIL: marv.streich@sympatico.ca
********
Secretary/Treasurer, Vicki "Terry" Frank (Florida)
Full-time caregiver to fiancé, Kyle Hahn, (1958-2003) creator of the ALS March
of Faces Banner.
Co-founder of the ALS March of Faces, and has served on the board since its
inception.
Works full-time as a legal assistant.
EMAIL: terry@march-of-faces.org
********
Past President, Judy Repass, PALS (Maryland)
Long-term survivor, diagnosed in 1975, age, 27.
A ventilator-dependent quadriplegic, lives a very full and active life as a home
decorator, gardener, avid CD collector, and ALS advocate.Marched to Capitol Hill
with the Banner along with other PALS in wheelchairs or on scooters several
times. In June 2004, joined the Race Across America (on the leg) from
Georgetown, P.A. to Atlantic City N.J.; "it was the most exciting ALS advocacy
event I've been involved with".
Website:
http://home.comcast.net/~mrsre/index.html
EMAIL: MRSRE@aol.com
********
Trustee (Communications), Debbie Tope, PALS (Ohio)
Debbie lives in Baltimore, Ohio with her husband and caregiver Chris. They each
have 2 children and have a total of 4 grandchildren. Debbie was diagnosed with
limb-onset ALS in August of 1995 but had over a year of symptoms, tests and two
spinal cord surgeries before that. Debbie spends much of her time working with
her website Focus on ALS which has been her mission since she started it in
1996. She has attended numerous ALS related events over the years the most
recent being the ALS Awareness Day at the Ohio Statehouse where she met with
State leaders promoting ALS awareness.
Website: http://www.focusonals.com
EMAIL: pals@focusonals.com
********
Trustee (Finance), Chuck Hummer, PALS (Florida)
Diagnosed with ALS, also know as Lou Gehrig’s Disease in October 2004.
He was the Chief, Dredging Division for the U.S. Army Corps of Engineers
Headquarters in Washington, D. C. a position from which he retired in 1989. As
Chief of the Dredging Division, he managed the national dredging program for the
United States ports and waterways, including the contract and government
dredging in the United States. Mr. Hummer has published extensively in the field
of dredging and the environmental aspects of dredging.
He was Assistant Chief of the Dredging Division, Panama Canal Company until
1979. Before that he was the Environmental Control Officer for the Office of the
Governor of the former Panama Canal Zone and Oil Pollution Control Officer for
the Panama Canal.
He has served on the board of directors of the Panama Canal Society of Florida
as Legislative Representative and 2nd Vice President. He was corporate Treasurer
of the Hope and Help Center of Central Florida, Inc., an Orlando-based AIDS
service organization from 1994 to 1998. He is presently acting as the court
appointed qualified representative in litigation for two Polk County
communities. From 1994-1997 he was the president of his community's homeowners
association. He was the president of the corporation that owns Lake Henry
Estates, the adult living community in which he lived from 1994-2001.
He is a 1955 graduate of Balboa High School and received his BS and MS from the
University of Notre Dame, Notre Dame, Indiana in 1959 and 1961 respectively.
EMAIL: gamboachuck@yahoo.com
********
Trustee, Sheila Tarter PALS (Virginia)
46 years old. Sheila was diagnosed August 12, 2004 with limb onset in her legs.
"Hard Times - Living in the Shadows : Calm before the Storm"
written by Sheila Tarter tells the story of the poor Appalachian region of
Kentucky, chronicling the life of Sheila and her seven siblings as they
experience one tragedy after another. Her book is available through
BarnesandNoble.com.
She is active in ALS support chats and forums and her motto is "I try to stay
positive and have a good attitude."
EMAIL: sheila.t@comcast.net
********
Trustee Emeritus, Tom Touchette (Ohio)
This is a lifetime position reserved for Persons with ALS. Tom is one of the
early crusaders for ALS March of Faces. He was instrumental in taking the Banner
from its design stage and promoting it out in the ALS community. Tom is the
best reason the Banner Program must continue. We all thank Tom for his early
role with ALS March of Faces.
EMAIL: Ouchette@aol.com
MGM
© ALS Independence 2003-08