May is als awareness month!!!

[JamesMcC]

My wife wrote the editor of my local newspaper an article on ALS and me of course....how about we all try do the same to spread ALS awareness.Thank you
James

[hopingforcure]

Good idea, May sure is als awareness month. And that sure is a good idea..

[JamesMcC]

Here is the artilce

ALS "Awareness"
May is ALS (Amyostrophic Lateral Sclerosis) awareness month. Just 5 short months ago, my husband, James, was diagnosed with this disease, often referred to in the U.S. as Lou Gehrig’s disease. Until just before his diagnosis, James was teaching tennis full time at the Teton Pines Tennis Center.
ALS is a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. Gradually the body weakens until the patient is unable to complete daily tasks on their own and requires full time care. Eventually, as ALS moves to the core muscles, the disease affects breathing and patients need permanent ventilatory support in order to survive. Because ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. One of the tragedies of ALS is that the patient remains cognitively alert as their body slowly wastes and becomes unable to function.
James’ symptoms began with difficulties in speech. At first in a slurring of his speech. Now, his "I love you’s" sound like "Uhhh Wuv UUUs" and he is starting to work with a system that enables him to speak through his computer. He is noticing a stiffening in his arms and hands, particularly his right. One of the challenges that ALS presents is uncertainty in its progress. There is no way to know definitively what symptoms James will experience next or how quickly or slowly his disease will continue. James doesn’t know how long he will be able to complete any given task. A life long tennis player, James has recently retired his racket as he cannot grip it with any strength, much less hit a tennis ball.
While James and I could easily let the sadness of what he can no longer do overwhelm us, we choose, instead to focus on what he can do and are grateful for all the things we have. James’ legs are strong so we continue to walk and hike in our beautiful surroundings. We are comforted by the love and prayers of family. We are thankful for the generosity, support and simple acts of kindness from this tremendous community of people in which we work and reside. We linger longer in hugs. We say the "thanks you’s" and "I love you’s" we all mean to say to others but often don’t. We hold hands a lot both as a show of unity and support for each other, and just to feel our hands together. Through this experience, we have grown closer to each other than we could have before the three letters A-L-S entered our lives. We have created the motto "gratitude heALS" for this journey because, while healing may come in the physical form, sometimes it takes a form that is much more profound.

[crystalkk]

James,

That is a very nice article that your wife wrote.

[BethU]

Great article ... beautifully written and clear. It will help not only spread awareness of ALS, but also understanding of the nature of the disease. Good job.

[mare]

James,

Thank-you for sharing this, and please thank your wife for writing it! It is beautiful !

[rick/Wpg]

Very nicely done!!! Great job!
Rick & Joan

[Valya]

In support of National ALS Awareness month, Dutch Brothers Coffee held a fundraiser to benefit ALS last Friday, May 8th at all their approximately 140 locations in the northwest US. My husband and I went to both locations in our town, thanked the manager personally and gave them a letter to pass onto their corporate offices. The letter briefly described ALS, our son's DX and our gratitute for their caring to fundraise for this horrible disease. We received a letter this week from the local owner of Dutch Brothers, personally expressing his concern for our son and enclosing 5 certificates for free beverages, which I plan to use for a fundraiser.

In appreciation of the Dutch Brothers fundraiser and to raise awareness of National ALS Awareness month, I sent this letter to our local paper. Be aware, everytime I copy/paste into this site, it rarely formats correctly, so if its messed up, I'm really sorry:

This month, for the 18th year, the Muscular Dystrophy Association (http://www.mda.org/) is hosting activities across the country to raise awareness of Amyotrophic Lateral Sclerosis — ALS, or Lou Gehrig’s Disease (http://www.mda.org/news/%20http:/www.als-mda.org/disease/als.html). In support of National ALS Awareness Month, Dutch Brothers Coffee held a fundraiser on May 8th, 2009 at all their 130 locations in the western states, including the two Chico locations. ALS is a disease that affects more than 30,000 American adults, with an additional 5,000 new cases diagnosed every year. For as-yet-unknown reasons, ALS kills the nerve cells that control voluntary muscles, including those used for breathing and swallowing, causing debilitating weakness and eventually, complete paralysis. When the breathing muscles become affected, the patient will need permanent ventilator support to survive. Striking previously healthy, fit adults in the prime of life, ALS often proves fatal within three to five years of diagnosis. Although extremely rare, teens under the age of 20 have developed ALS. There is no cure for ALS and no effective treatment.

Dutch Brothers Coffee gives back one percent of gross sales to their communities. In 2007, the company donated nearly $500,000 to nonprofit organizations such as MDA, American Cancer Society and Boys & Girls Clubs of America and many other local organizations. We would like to extend our deepest thanks to Dutch Brothers Coffee for supporting and giving back to the communities that purchase your product and for furthering research into depilating diseases.

[JamesMcC]

Thankyou all,My wife is an angel.
James

[JamesMcC]

Great job Valya, keep up thegood work.

[Valya]

Submitted the letter to the editor last Sunday, a week ago, and it's still not printed :mad:

[mare]

I have to say I'm a little disappointed with the publicity about ALS Awareness Month!

I watch my share of "mindless" TV shows- talk shows, entertainment shows, etc. and I was disappointed that there wasn't more (or anything) about ALS.

The MDA has Nancy O'Dell as spokeperson- but, where was she in promoting this?
Maybe I missed this; someone tell me if i did.

I think if "they" declare May as ALS month, the ALS association and the MDA should do more to get this in the media.

Maybe I expect too much !?!

[alice3]

There is never anything on the talk show about als. I just send DR Phil a message and ask him to do a show. let see what happen. also, i plan to contact Oprah, today show and Dr. oz. We have to keep trying. I was diagnosed in jan 2008. Stay postive and pray for a cure.

alice3:smile:

[kevinw]

I attempted to do my part...I was getting so much information mailed to me about May being ALS Awareness, but there was nothing about it in the paper. So I did write a letter to the editor that was put in on 5/15/09......below is a link to the letter (I hope it works)...

http://www.lehighvalleylive.com/opinion/index.ssf?/base/news-2/1242360307222860.xml&coll=3

[hopingforcure]

Hi everyone and thank you for your work on getting awareness out. I was thinking that maybe we could all try to forward Guardian Angels for ALS video to all media that we can think of in the next couple of days. We could head it with the fact that this is ALS awareness month. Send it to all the local and national media you can think of, I just want more attention for this great organization for which Stu has given so much of himself too and us.