Your Hope is Our Direction
"...there is more to be done... to stand on my own, walk again, speak clearly, breathe deeply and revisit the life I have nearly forgotten. That flicker of light, deep in my gut, is called hope...that is my reality."
Ben Byer
February, 2008
Our son Ben was only 37 years old when he shared these inspiring words on his blog just months before ALS took his life on July 3, 2008. Ben never lost hope and worked diligently on behalf of ALS patients throughout the world up to his last moment.
In Ben's name, honor and spirit, we've established ALS WORLDWIDE, a non-profit organization that will allow us to carry on his valiant battle against ALS - by helping patients and their loved ones obtain information, advice, support, guidance and perhaps most importantly hope...until a cure is found.
Please visit our website ALS WORLDWIDE where information on recent research, new therapies, stem cell opportunities, support for family members, self help suggestions and more is provided and updated frequently. Raising awareness about ALS in the political, media and community arenas is integral to our efforts. Beyond providing information and education, we offer friendship, concern and genuine care to people with ALS, their family and friends who are close to them
ALS WORLDWIDE is favorably positioned at the pinnacle of several cutting edge developments. Through our efforts, along with an impressive activist group of ALS patients, Iplex, a biopharmaceutical, has become available to a small group of patients in the United States. It is hoped that this limited clinical study, under the auspices of the FDA, will lead to Iplex access for all ALS patients who wish to use it. Hospital San Jose TEC de Monterrey, Mexico, offers another hope as ALS patients access this innovative stem cell treatment. Additional opportunities are being explored. Much more needs to be accomplished.
To those who have lost a loved one to ALS, we grieve with you and understand your pain. To those fighting each day to stand, speak and breathe more easily, we appreciate your struggle. To those searching for a cure, we applaud your efforts. And to those who embrace our struggle, we welcome you. Join our efforts to bring this devastating disease to its knees. Contributions both large and small are welcomed. Together with all of our intellectual, emotional and financial support, we can succeed.
Barb and Steve Byer
April 28, 2009
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