[AlsofNevada Crisis]

We’ve covered on the front page of ALS of Nevada, our serious potential inability to remain an active nonprofit on behalf of Lou Gehrig’s disease victims and their families. We are desperately trying to raise the money needed to just “remain in business”!

To that effect, for those living in Nevada or those planning a trip soon to Las Vegas, we are asking you to support our cause. The wonderful part is you can get two (2) free show tickets to V, The Ultimate Talent Show just by donating and supporting ALS of Nevada.

No one likes to have to beg, especially in these tough times, but begging we are… we must have, truly need, your financial support to remain afloat!

Please find it in your hearts to purchase the tickets or send a donation.

We thank you very much!

Approximately 10% of those affilicted with ALS inherited this devastating disease. While the “family connection” is low, it does exist. Recently ALSA.org announced from their “In The News” section, a clinical trial underway. This clinical trial is aimed at “an inherited, aggressive form of Lou Gehrig’s disease also know as familial amyotrophic lateral sclerosis (ALS).”

Isis Pharmaceuticals, Inc., is in Phase 1 of their study. They are testing an “antisense drug designed to inhibit production of SOD1.” SOD1, or superoxide dismutase, may be the cause of approximately 20 percent of all familial ALS cases. To read the full writeup, please click here.

Also, we understand and fully appreciate these harsh economic times. However, your donation directly to ALS of Nevada will help us assist the victims and caregivers within our own state. All monies stay here in our state to help Nevada ALS victims.

ALS of Nevada is not affiliated with ALSA. We are a not-for-profit group covering a very large state. Donations of any amount are always appreciated!

[alsreliefmucus]

First, thanks for being so patient when it comes to updating a new post for the blog. We were extremely busy moving to the new Lou Ruvo Brain Center, as well as planning for all our upcoming 2010 fundraising events.

However, we would like to bring to your attention a website that is going to help many. Healthier Lungs is a must visit for all caregivers assisting victims of ALS!

Their section, NAC Shows Benefit in ALS Studies is supported with medical documentation and the reason for us posting it here.

In our sessions with caregivers and ALS victims, the above referenced web site was brought to our attention. Again, we feel you will find valuable information. Both links open in new windows, so you can just close them when you are done and leave us any comments, questions, or concerns.

Remember, if you live in Nevada, we’re just a phone call away! See the sidebar for details.

[alsofnevada-events]

For those of you unaware of the fact that there is an entire ALS information website “out front,” we didn’t want you to miss out on the newest fund raising events planned for the new Year!

You’ll want to head to our Calender of Events, but here’s just “taste” of things to come. Whether you live in Nevada or are planning a trip, do see what we have scheduled. Your attendance and support means the world to us, our patients, and our caregivers. And, you get to support a worthwhile cause (1 in 10 families are impacted) AND have a great time:

Get Involved Support ALS!

Stop by the website and see what we’re all about – we are hear to help! Even if you do not live in Nevada, we can assist you to find the best resources for you and your family!

[grants/donations/als]

Our apologies for not posting as often as we would have liked this past year, but the move to the new Center (see post below this one), and keeping in touch with patients and caregivers, and the clinic and fund raising consume lots of our time.

BUT… and this should have been announced last month, we have wonderful news!

We received the news that ALS of Nevada will be receiving a $25,000 grant from Wal-Mart that we applied for in August. This grant is restricted to our clinics and the buying and repairs of equipment for our patients statewide.

So with the new move complete, wonderful donations coming in through individuals, families, small and large businesses, we’re ready to hit 2010 with everything we’ve got!

We’d prefer, actually, to go out of business! Finding a cure is the miracle we all pray for! This Season, please don’t forget about us here in Nevada. You’ll find our donation information off there to your right.

Happy Holidays to All!

[louruvobraincenter]

We have begun our new move to the brand spanking new Lou Ruvo Center on Bonneville in Las Vegas. While we’re not 100% up and running, the move is going smoothly. It’s just we have a lot of equipment, files, etc., to get sorted.

In our old offices (and we do mean “old”) there was a bit of space. Cubicles now make up our wonderful space in this fantastic facility.

Here’s a photo of what the building looked like in September 2009. As soon as we’re able, we’ll update everyone on it’s current look (if you haven’t already traveled by to take a look for yourself).

Lou Ruvo Brain Institute Las Vegas Sept 2009

(Photo courtesy of Tom Dwyer)

[ketoneburning why fattening up is so important with ALS]

The folks over at ALS were kind enough to let me do a personal post of my own. My mother passed from ALS and the one thing that I wish, besides having her back, would have been to have thought ahead of time about the amount of fat she actually lacked when she was diagnosed. You see my mother was always “watching her weight.” Normally, this is a very good thing, but when ALS strikes being fatter is healthier!

While she could still swallow (eat normally), she should have been eating ice cream, cookies, any and all fat-inducing foods by the handfuls (and we should have made her!!).

The reason is very simple. This horrible disease is going to attack every part of a person’s body. It goes for all the fat reserves first, and then… well there are only muscles and organs left.

The more obese even a person is – while they are able to pack the weight on – the better when it comes to “fighting” ALS!

Having been on fat-burning diets in the past, I KNOW the smell of ketones (fat) burning. It gives off a distinct odor. And as her ALS progressed, the smell was overwhelming. However, by that time it was too late. She had too much trouble swallowing, had no appetite at all, and just couldn’t do it. She just did not have the energy or ability to do the one thing she needed desperately to do… eat!

So PLEASE if you have a loved one diagnosed with ALS (Lou Gehrigh’s disease) and while they are able, MAKE THEM eat, and eat, and eat. The more fat they have stored to burn the better!

This is a horrible disease, and too often we – the caregivers – feel alone, exhausted and totally helpless. Those with ALS, my heart goes out to you. PLEASE follow this advice – eat while you can – fattening rich chocolate brownies with mounts of ice cream, whip cream and nuts. Whatever you can… just EAT. Stop thinking “healthy” and start thinking “I need to pack on the pounds!”

Thanks for reading ( in loving memory to my mother, Maureen Grone).

* * * * * * * * * * *
Thanks again to the folks at ALS of Nevada for letting me post. If YOU have words of wisdom, encouragement, strategies, whatever, feel absolutely free to send your write ups in using the “Have a Question?” contact link on your right. We will happily post your information!

Thankfully, the Department of Veteran Affairs has taken the appropriate action. They now list ALS as a disease entitled to “presumptive service connection.”

This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits.

An overview of benefits available to veterans, survivors and dependents is available from the VA is included on our website.

Visit our ALS Veterans Information page for benefits and links out to the resources you need.

[alsnewsandsupport]

We recently came across a website for staying on top of ALS news and recent advancements.

Topix has a health section devoted entirely to information about ALS (also known as Lou Gehrig’s disease). One of their readers has made a claim in their forum that most likely will astound you.

We here at ALS of Nevada have no idea of the validity of such a claim, and encourage you to draw your own conclusions. However, that said, head over to Diagnosed in August 07, Symptom free by January. The input was posted on May 3, 2008.

It also appears to have potential if you are looking for an online support group.

Come join the fun and raise money for an outstanding cause – ALS of Nevada! Enjoy the Las Vegas 51s versus the Reno Aces, including the fireworks!