Late ALS patient's documentary raises awareness
Thursday, May 07, 2009 | 12:05 PM

By Karen Meyer

video
http://abclocal.go.com/wls/story?sec...ues&id=6801042
May 7, 2009 (CHICAGO) (WLS) -- Amyotrophic lateral sclerosis, known as ALS, is a fatal neurological disease that kills 90 percent of all it victims within five years.

One of them was a Chicago filmmaker who chronicled his fight against ALS in an award-winning film. Ben Byer's documentary Indestructible was created to increase awareness of the challenges faced by living with ALS.

Ben Byer was leading a happy and successful life when at the age of 31 he was diagnosed with ALS.

His sister Rebeccah Rush remembers when it happened.

"It was a shock," Rush said. "It was something that we didn't know anything about, we all had some idea that Ben was going to get through thing and fight this and survive."
The first symptom of ALS showed up in his hand.

"He was a house painter as a day job, he was a writer and an actor but needed a day job, so he was a house painter. He couldn't hold a brush anymore," said Rush.

When people are diagnosed with devastating disabilities, like ALS, it also affects family members.

"It has given me such a huge amount of perspective and the ability to really live my life with intention and know that I'm susceptible to anything as well," Rush said.

And while Indestructible won awards at film festivals, Ben's ability to share his struggles is making a difference.

"He really was indestructible, and even though now he's dead, but you know, what he left behind is amazing and it's affected people in so many ways all over the world," said Rush.

Ben died July 3, 2008. The Chicago Muscular Dystrophy Association recently created The Ben Byer ALS Awareness Award which is to be presented yearly to individuals making significant contribution towards the fight against ALS.

For more information, go to:

www.indestructiblefilm.com

www.mdatoasttolife.com

Basu: In time of need, a nurse was there to care
REKHA BASU • rbasu@dmreg.com • May 8, 2009


On May 3, at a ceremony in Hy-Vee Hall marking the start of National Nurses Week, 100 Great Nurses of Iowa were honored. I nominated one of them. This is an edited version of the remarks I gave:

When my husband, Rob Borsellino, was diagnosed 4years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.
When my husband, Rob Borsellino, was diagnosed 4years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.


http://www.desmoinesregister.com/art...80355/-1/ENT06

Wisconsin Stem Cell Research Could Lead To Medical Breakthroughs
Brookfield Man With ALS Driving Force Behind Project
POSTED: 3:53 pm CDT May 7, 2009


Jeff Kaufman


BROOKFIELD, Wis. -- There is a stem cell research project under way in Wisconsin that could change almost everything about that field.

May is ALS Awareness Month and to learn more, click here.

http://www.wisn.com/health/19398732/detail.html
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ALS/MND Registry
http://www.patientslikeme.com/registry