Fighting Lou Gehrig's Disease on Every Front!

Our Mission: To lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.

Sunday, August 24, 2014

In My Shoes, poem by Ken Hoogenboom

If you were in my shoes, what would you do
Could you be happy or would you be blue
You're not able to stand, not able to walk
You're not able to lift your arms or to talk
Would you hold your head high, feel the same things
or be disappointed with what life brings
Would you look on the bright side, see what can be
or would you cry and say Oh! woe is me
Would you shun your friends, your family too
Would they even care to come and see you
In my shoes I hope you never will be
But it's not all sad as I hope you will see
There are so many things I can do if I try
I have never had a reason to sit down and cry
There is sunshine and joy in every day
that brings so much comfort and peace my way
Family and friends give me so much love
My courage and strength all come from above
No pity parties, no singing the blues.
I pray that you never walk in my shoes.

Tuesday, August 19, 2014

Great article from our friend Nick Barnowski's blog

In defense of the ALS Ice Bucket Challenge

I’ve come across a blog post in the Detroit News that was published Monday. It was written by Kathy Hoekstra, a Michigan graduate and communications manager. It upset me.
I shouldn’t have to defend the ALS Ice Bucket Challenge. By now, nearly all of you know and understand what it is all about. You’re challenged by someone you know to dump a bucket of ice water on your head and then you nominate someone else to do it. Simple. All to raise awareness for this awful disease.
My dad passed away from Lou Gehrig’s Disease in July of 2012, fewer than two years after he was diagnosed. I’ll never get over it and I’ll never understand why it had to happen to him. It will haunt me till the day I die.
So when Ms. Hoekstra asks, “Does Stephen Hawking care if you dump ice on your head?” it’s easy to see why I’d be upset.
Let me tell you something. If Stephen Hawking – who has lived with a motor neuron disease damn near similar to ALS for more than 50 years – is anything like my dad, I know that he cares.
For more than 50 years, Stephen Hawking has been wondering what he did to deserve ALS’ wrath. He’s sat in his wheelchair, day after day after day, likely wishing he could hear the sound of his own voice come out of his mouth instead of in his mind. He’s yearned and desired to breathe like a normal human instead of through a ventilator. Stephen Hawking, one of the most brilliant scientists in the history of the world, has been forced to watch his mind grow while his body seemingly decomposes right in front of his eyes.
I’ll bet that Stephen Hawking has spent hundreds if not thousands of hours wondering if there will ever be a cure for ALS. Wondering what the day will be like when a cure is found. Wondering if it will happen in his lifetime, or wondering if it will take another lifetime.
If Stephen Hawking is anything like my dad, and like most ALS patients, he cares.
An amazing benefit of the coping process is that we learn about these diseases and conditions.
This is 100 percent true. Before my dad was diagnosed, all I knew was that 1) it was going to kill him, and 2) Lou Gehrig had it. As the disease wreaks havoc, you learn more about it than you want to know. The disease is nightmare inducing and takes you to the depths of hell. It is the worst thing in the world.
Did you know that ALS has been around since 1869 and still has no treatment options? That there is no clear cut way to diagnose it, other than to rule other diseases out first? That two out of every 100,000 people will get the disease? Or that 30,000 Americans are living with it right now?
But what has the ice bucket challenge done? Educate people on these facts.
We raise money for research, treatment and help for the victims and their families. This involvement helps us feel like we are somehow making a difference — if not for the person who suffers, for whom it might be too late, then for those who follow.
Then just stop the article here. With a disease that has no cure, ANYTHING that’s done can make a difference. Yes, the difference made by taking the ice bucket challenge often isn’t tangible to the person taking it, but I guarantee that it is to someone who has ALS. The whole point of this raise awareness and raise money – anything makes a difference with this disease.
And any of us who have ever worked in the media get involved ten-fold as participants and storytellers to these efforts. The more gimmicky, the better, right? Raise your hand media friends if you have ever spent time in ‘jail’ to raise ‘bail’ money for the March of Dimes? Or relayed for life? Or shaved your head to conquer kids’ cancer? Or sat up on a freeway billboard until people coughed up enough money for you to come down?
How can you trivialize things like that? As “storytellers,” those in the media should be able to see the passion behind raising money for March of Dimes. The dedication it takes to participate in Relay for Life. The bravery displayed each time someone shaves his or her head in honor of a friend of relative with cancer.
Yes, there are idiots out there who have done the ice bucket challenge as a way to make themselves more popular on social media. Congrats to them. But the underlying point remains. Each time a person posts an ice bucket challenge, SOMEONE out there learns about ALS. One more person than before is more educated about this stupid, stupid disease that has stripped lives away from the greatest people on earth. One more person makes a donation, or decides to get involved with the ALS Association.
So, yes. With all due respect to the celebrities, Gov. Rick Snyder and many of my colleagues who have taken the “ice bucket challenge” to raise money for amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, it has struck a nerve. An article in Slate explains:
“As for “raising awareness,” few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt.”
I would argue nothing has been more influential in raising awareness about ALS than celebrities doing the ice bucket challenge. To say it strikes a nerve is, in my opinion, vein.
More people now know about ALS than ever before. For a disease that so many people know so little about, awareness is everything. As far as the Slate article goes, well, it’s Slate. Maybe my mindset is different than the author’s in that whenever I see a video, I think of the impact it could potentially have, instead of what’s being said in it. Most of the “substantive information” is likely relayed before the actual challenge is filmed. I just went through this with one of my roommates. We talked about what ALS is and my experience with the disease before he doused himself with ice water. Chances are, the people he nominated will do the same thing.
This is all designed to get the ball rolling. Dumping water on your head isn’t the cure to ALS. But it’s a start. Just under a month ago, I was still explaining the disease to people. Now, practically the entire continent at least knows what ALS is. Progress is a good thing.
The writer goes on to explain that some pro-golfers started the ice pail craze with the intent to simply get video of themselves doing something silly, “the charity part was an afterthought” and ALS was an AFTER-after thought at that. The Today Show’s Matt Lauer donated whatever money was raised from his ice shower went [sic] to a hospice program.
Well, former Boston College baseball player Pete Frates is credited with starting the challenge, not a bunch of golfers. If you want to cry, watch ESPN’s incredibly emotional piece on Frates and the challenge here. Matt Lauer is one of the most famous people on TV and did the challenge. Yeah, he probably should have donated to the ALS Association, but as I said, it’s awareness.
Although the ultimate use of this money is still rather murky to me, I’m not disparaging the $2.3 million raised for ALS. ALS is a horrible, horrible disease, an awful death sentence that typically stretches about five years. For the cause to have raised $2.3 million, compared to $25,000 at this time last year, is fantastic.
The ALSA’s expenses are outlined here. It has also reported that $15.6 million in donations have come in since July 29. There have been a total of 307,598 new donors. For ALS, those are astounding numbers. It’s fantastic. Why was this article written?
Has anyone asked Stephen Hawking what he thinks of people subjecting themselves to two seconds of icy discomfort for ten minutes of attention? I bet the renowned physicist and cosmologist would give us a science lesson of what happens to the ice crystals when they hit Lauer’s bald head. Or the cosmic reaction of ice water dripping down Fox and Friends’ Elisabeth Hasselbeck’s hair. And quite frankly, I’d be more interested.
This is almost insulting. More than $15 MILLION has been raised in under a month and you think Stephen Hawking, the second most famous person to live with the disease other than Lou Gehrig himself, cares more about ice crystals or whatever than that? Is this for real? I would love to know what Stephen Hawking thinks about the money that’s been raised for the cause, or the awareness the challenge has brought. Hawking has been the subject of jokes for years simply due to bad luck. The fact that this author cares more about Elisabeth Hasselbeck’s hair says a lot in my opinion.
Please, dump the ice bucket. Ice cubes melt in mere minutes and so will this fad. Here is a far more effective “challenge” to raise awareness about ALS that will leave a life-long lasting impression on everyone who tries it. Lauer, Hasselbeck, Oprah, Bill Gates, Lebron James, Gov. Snyder — everyone:
• Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
• Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
• Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
• Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
I’ve long been on the fence about suggestions such as this. I wouldn’t wish ALS upon my worst enemy and while one could temporarily walk in an ALS patient’s shoes by following what’s above, no one can enter the mind of someone stricken by the disease and truly know what it’s like.
I saw my dad’s physical reaction when he could barely stand one day at Niagara Falls. I saw the look on his face each time he or I had to explain why he needed to enter a building with a broken hockey stick to hold him up. I saw the pain in his eyes every time we had to load him into our conversion van.
But I’ll never truly know what he was thinking. I can take a good guess, just like I can guess why Stephen Hawking cares about the ice bucket challenge, but I’ll never know exactly. As I’ve learned, living with ALS requires a shift in mentality. No longer can things wait until tomorrow. The sand in every human’s hourglass is set to run out at some point; for ALS patients, the sand seems to drain at the speed of light. Life deteriorates one day at a time, but one thing remains: hope.
For a disease that’s so tormented, those who are forced to live with it often are the ones with the most hope. Hope that one day ALS will be a distant memory and that precious lives won’t be taken from us when these people have so much more to give to the world.
That’s why I will always defend the ice bucket challenge. There has never been a better month for ALS awareness, research, and fundraising, and sometimes all it takes is a glimmer of hope to change the world. I believe that one day there will be a cure for ALS, and while some may disagree, every person who has posted a video of themselves pouring water on their heads can say they played a part in defeating one the world’s most devastating forces.

Check out his blog at
http://nbarnowski.wordpress.com/2014/08/18/in-defense-of-the-als-ice-bucket-challenge/

Tuesday, January 15, 2013

Science Daily

Check out this article from Science Daily.

Jan. 9, 2013 — Apparent stem cell transplant success in mice may hold promise for people with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. The results of the study were released today and will be presented at the American Academy of Neurology's 65th Annual Meeting in San Diego, March 16 to 23, 2013.
"There have been remarkable strides in stem cell transplantation when it comes to other diseases, such as cancer and heart failure," said study author Stefania Corti, MD, PhD, with the University of Milan in Italy and a member of the American Academy of Neurology. "ALS is a fatal, progressive, degenerative disease that currently has no cure. Stem cell transplants may represent a promising avenue for effective cell-based treatment for ALS and other neurodegenerative diseases."
For the study, mice with an animal model of ALS were injected with human neural stem cells taken from human induced pluripotent stem cells (iPSCs). iPSC are adult cells such as skin cells that have been genetically reprogrammed to an embryonic stem cell-like state. Neurons are a basic building block of the nervous system, which is affected by ALS. After injection, the stem cells migrated to the spinal cord of the mice, matured and multiplied.
The study found that stem cell transplantation significantly extended the lifespan of the mice by 20 days and improved their neuromuscular function by 15 percent.
"Our study shows promise for testing stem cell transplantation in human clinical trials," said Corti.
The study was supported by AriSLA -- The Italian Foundation for Research on Amyotrophic Lateral Sclerosis (ALS).

Friday, January 4, 2013

January Connections Newsletter



2013 is a very important year for The ALS Association Michigan Chapter as it marks our 25th Anniversary year of providing care and services to those fighting ALS in Michigan. The Michigan Chapter was founded on February 22, 1988 to serve the needs of those living with Amyotrophic Lateral Sclerosis and their caregivers. We continue to fulfill our mission 25 years later by serving families across the great state of Michigan and in 2012 expanded services through a regionalized care model which now includes transportation for patients to ALS Centers across the state. Patient access to exceptional care through multi-disciplinary teams at one of our clinical partners including the ALS Association Centers of Excellence remains one of the most important programs we provide. As we toast the beginning of a new year please join us in helping us celebrate 25 years of service in Michigan.
Simple Ways to Stay Involved in 2013
Every January, friends and family make New Year's resolutions in an effort to make a difference in their lives. Imagine making a resolution that not only benefits you, but also those courageously battling ALS. You can take the fight against Lou Gehrig's Disease to the next level by supporting our chapter even more in 2013.
We are incredibly grateful for everything you have done and continue to do for those living with ALS. Listed below are a few ways you can further your partnership even more with our chapter in the New Year. Many of these suggestions you may already do, but some might be new for you.
For more suggestions on how you can strengthen our partnership in 2013, please download the complete list here (PDF).
Thank you for striving to make a world without ALS a reality. The thousands of people living with this disease may not know your name, but they certainly feel the impact of your commitment.
Sincerely,
Susan Woolner
Executive Director
The ALS Association Michigan Chapter
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Advocacy and Public Policy
2013 Advocacy Day and Public Policy Conference

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Patient and Caregiver Services
Ask the Doc: New Potential Drugs for ALS
Monthly "Question and Answer" with Dr. Kasarskis -- The topic this month is, "New Potential Drugs for ALS" Read the full story.
We have a variety of resources to help you improve your quality of life. Please learn more about our support groups and caregiver tips to enhance your ability to deal with the physical and emotional issues associated with ALS.



Dealing with Tough Transitions in Care
Dealing with the healthcare system and managing critical periods of transition can be challenging to people with ALS and their caregivers. Here are two organizations that may be helpful:

CarePlanners
- A fee-based service that provides advice on evolving needs, including assessment, 24/7 access to care planning experts, resources, medical billing and Medicare charge experts
- Founded by Dr. Nancy Snyderman, a surgeon and chief medical expert on NBC News, and Alan Blaustein, a cancer survivor and investor
- Staffed by nurses, nurse practitioners, social workers, Medicare specialists, insurance billing and claims experts
- Call 800.989.3588 or visit www.careplanners.com for more information.
National Transitional Care Coalition
- A nonprofit organization that includes organizations and individuals committed to addressing problems inherent with transitions in care, such as being discharged from a hospital or needing a new level of care
- Founded in 2006 by the Case Management Society of America
- Provides information and resources for consumers and health professionals, including a “Patient Bill of Rights During Transition of Care,” a toolkit for hospital discharge and guidelines for a successful hospital stay
- Visit http://www.ntocc.org/ for more information.
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Upcoming Webinars
Research Webinar
Tuesday, January 15, 2013 at 1:00 p.m. Pacific Time, 3:00 p.m. Central, 4:00 p.m. Eastern
Hosted and organized by The ALS Association’s Research Department
Click here to register for the call and get call details



Communication Options for Persons Diagnosed with ALS and FTD
Monday, January 28, 2013 at 11 a.m. Pacific, 1 p.m. Central, 2 p.m. Eastern
Speaker: Alisa Brownlee, ATP, The ALS Association Greater Philadelphia Chapter
Hosted and organized by The ALS Association’s Care Services Department

Call-in toll-free number (US/Canada): 877.668.4490
Session number: 825 686 842
Session password: Atcall2013
Click here to attend this webinar.
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Research Update
ALS Association TREAT ALS™ Portfolio to Fund Ten New Awards Focusing on ALS Therapies
The ALS Association’s Translational Research Advancing Therapies for ALS (TREAT ALS™) portfolio will include 10 new awards, which will fund grants, drug discovery contracts and clinical and research studies aimed at finding improved treatments for people with ALS.
TREAT ALS™ will fund two clinical management grants, three drug discovery contracts, two clinical pilot studies and three biomarker studies. Currently, the TREAT ALS™ portfolio has 80 active research projects with a total award value of $12 million.
Click here to read the full article.



News from the International Symposium on ALS/MND in Chicago
From Dec. 5 - 7, scientists from around the world gathered in Chicago, Ill. to focus on progress in hastening treatments and a cure for Lou Gehrig’s Disease at the 23rd Annual International Symposium on ALS/MND. The ALS Association is pleased to have been an official sponsor of this event. As the meeting concluded, The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., provided an update, below on three recent clinical trials involving people with amyotrophic lateral sclerosis (ALS) presented at the symposium.
Click here to read the full article.



ALS Association-Funded Researchers Discover New Links Leading to Neuron Death
A team of researchers have unveiled a process which places neurons at risk of cell death. This finding characterizes numerous neurodegenerative diseases and emphasizes the connection between several proteins known to go awry in ALS and a related disease, frontotemporal dementia (FTD). This research appears in today's edition of the Proceedings of the National Academy of Sciences.
The first protein involved is TDP-43; a lack of this protein has been shown to cause both ALS and FTD. This study revealed that when there is a dearth of TDP-43, a second protein, sortilin, is made in excess. Researchers found some copies of that protein are defective.
Click here to read the full article.
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How You Can Help
Keeping A New Year's Resolution
Here is a New Year’s resolution that you can feel good about keeping that will take care of you and your loved ones. At this time of year we all make resolutions which may be a challenge to keep despite all our good intentions. Take some time now to make sure you have these key documents in place and up to date, in case it becomes necessary for another person to act on your behalf or in the event of your death.
1. An Advance Medical Directive
This document outlines what kind of care you want to have if you are unable to make medical decisions for yourself.
2. A Durable Healthcare Power of Attorney
A healthcare power of attorney appoints someone to consider your medical circumstances and make health care decisions for you according to your wishes.
3. A Durable Financial Power of Attorney
A financial power of attorney appoints someone to make financial decisions for you if you are unable to make them yourself.
4. A Will
A will directs the distribution of your assets after your death and is an opportunity to communicate a heartfelt remembrance. A will can serve as a loving testament to the people and causes you care about. If fighting ALS is important to you, a bequest to our chapter is one of the easiest and most popular ways to help fund our work to eradicate this devastating disease.
Once you have these documents, be sure to keep them in a safe place and advise loved ones of their location. Then you can rest easy knowing you are well prepared.
Please contact our office for more information or if we can be of assistance.

Thursday, December 13, 2012

What We Accomplished Together


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As the year draws to a close, we are thankful for all that you do for our chapter and the fight against ALS. It's because of the generosity of people like you that we are able to fund global research to find a treatment and a cure for ALS, support nationwide public policy efforts, and provide compassionate care and support for people living with Lou Gehrig’s Disease and their families in our community.
As we head into the New Year, let's celebrate some of the accomplishments of 2012 and look towards a brighter future filled with hope and an ever growing sense of determination.
RESEARCH
  • We have 80 active grants in our portfolio and, as of January 2012, committed over $70 million to ALS research efforts.
  • For the first time ever, scientists we funded identified an ALS biomarker in the blood that may lead to monitoring the progress of the disease through a simple blood test.
PUBLIC POLICY
  • We secured $7.5 million for the ALS Research Program at the Department of Defense, a 17% increase over last year.
  • We more than doubled the number of co-sponsors of the MODDERN Cures Act, legislation that would stimulate and expedite the development of new treatments for ALS.
CARE SERVICES
  • We offer vital information and assistance through our support groups to more people every year living with ALS.
  • We continue to provide consultation to assess the needs, suggest equipment and help families plan for the future.
Thank you for everything you do for those dealing with the challenges of ALS. Your support is like a ray of hope, guiding us towards a world without ALS.
Happy Holidays to you and your family!
Susan Woolner
Executive Director
The ALS Association Michigan Chapter
P.S.- There's still time to make a generous tax-deductible gift before the year is over.