Friday, May 8, 2009

So..after a day of blogs...

You might be tired of me, this being already my fourth or fifth post of the day. I'm probably breaking all kinds of social media protocol. I've been a Lion today for ALS, posting letters, rallying for donations, hoping for change. Change we can believe in, to borrow a recent and resonant campaign slogan. Once again in my life, I care not for protocol. Never have been much for it, to be honest. If you know me, you know that to be true.

I am sad tonight because we could not attend a dinner party that was specifically planned as a "safe" night out for us with close friends. Amazing friends actually, that know we can't really go "out" to restaurants anymore and who are sensitive to our situation and care extraordinarily about those issues. We literally got to the door to go out and H just had to say she couldn't do it. Her neck was tired, her voice was weak, her ability to have cheer had gone. I can only imagine how difficult that is for her, knowing her friends wanted her and needed her in some way. This is the life of denial that ALS brings us all.

After a late soccer game for J, one of freezing cold and blowing wind, I made my way to our friend's house to share a few minutes and a glass of wine, without my wife. I brought home some excellent food that was especially prepared for her gluten free diet, which she had no heart to eat. I'll admit I did coax her to a few bites of the special cheesecake Laurie, i assume, had made for her.

Strong as we may be, or pretend to be, this is very hard and my heart breaks a little every day. She is such a strong woman, it is hard to see her weak. We did make it to a Mother's day poem reading that R's 4th grade class put on for all the moms. R's poem concluded with "But I will always remember you for loving me, no matter what happens." I think that took a bit out of both of us, only because the "what" that will happen looms over us very large. It must have been hard for her to write, because she is a considerate child and i'm sure these words did not come lightly to her. A beautiful, innocent 9 year old should not have to contemplate such things.

If you will induge my poetry for a moment...

My heart is pure rock strung up on a frame
pierced in the middle cracking so slowly towards it's edges.
Where my girls are concerned, it cracks more than most,
like wet leather in the sun, pulling harder towards the post.
I pray that it does not break

Good night my friends. God speed on your travels to Washington or for the longing within your hearts, whatever they may be.

Dutch Bros Rocks...

Got a note back from Dutch Bros...Good people!

Thank you very much for your email. We are more then happy to apply the proceeds from your purchase to the MDA fund. Have an outstanding day!
Dutch Bros. Coffee
"... to give every living creature you meet a smile!" - The Dutch Creed

-----Original Message from me to them-----

Hi, I purchased some gear on your site the other day based on a promo for the ALS day posted by Kassi. The total was about $50, but I did it the day of her post. I would respectifully ask that you apply my purchase to the ALS contributions. Thank you very much, Bill

------------peace out---------

Dutch Bros Coffee - Donating all proceeds from today to MDA and ALS

Hi again all,
For anyone out on the west coast...
Dutch Bro's coffee is donating ALL proceeds from today's sales to ALS and MDA causes.
If you have a local Dutch Bro's coffee shop, please go buy a cup, some beans or a smoothie today!
Locations here:

I went online the other day and bought a couple shirts, which are really cool and comfy. I'm hoping that they'll donate my little contribution as well since there's no Dutch Bros out here in Colorado AND I Gomered and did my buy on the wrong day! I sent them an email so if they do respond, i'll let you all know.


A Note from the CEO of ALS - TDI

Hi again everyone:
During this ALS Awareness Month (May) and especially over the next week or so, I expect to be more active than usual posting ALS related information vs. writing from my philosophical perspectives or about our personal experiences.

Attached is a letter from the new CEO of ALS - TDI, which, in our opinion, represents the best chance for a cure or treatment in a time frame that is going to be fast enough or streamlined enough to help Heidi or the majority of PALS (People with ALS) that are living with this disease today.

Their focus is to find a drug that is already approved by the FDA for something other than ALS that shows efficacy in treating ALS. In this way, it could be prescribed for "off label" use and would not have to undergo the whole, years long, process of testing and approval for a brand new drug as currently required by the FDA.

Donations to the "Hope for Heidi" page linked at the top of this page go directly to them and we will continue to support them through any funds generated by our other efforts including the ads on this site, future sales of my book (to be published one of these days) and the very cute fundraising efforts being undertaken by our daughters and their large plastic box for donations.

=============Begin Dr. Perrin's Letter===========

Dear Bill,
May is ALS Awareness month, and we here at ALS TDI thank you for your support, your donations and your guidance over the past year. It is only because of you that ALS TDI scientists have the tools and resources they need to get this job done as quickly as possible. It is also important that you know that we are making progress. Your funding has made possible the profiling of an extensive array of gene expression data, but more importantly that effort has led to the identification of lead candidates, which in turn we are using to create potential therapeutics.

Today, ALS TDI has dozens of exciting projects in each of its strategic pipelines; gene therapies, protein biologics, stem cells and small molecules.I was humbled to report our progress to the hundreds of people that joined our most recent Research Update on April 8th (which we broadcast live from our lab over the web). This is your lab, and it is through these types of interactions that we strengthen that bond. As I reported during that webcast, we have reason to be excited here at ALS TDI, with several potentially important findings being validated today in our lab which could drastically impact therapeutic development for ALS.

I am excited to be your new Chief Executive Officer and welcome your messages and encourage your continued involvement in our work to defeat ALS. All of us at ALS TDI believe that ALS can and will be stopped. And yes, you can help. If you have not already done so, please become involved in one of our many fundraising activities, such as the 4ALS Awareness effort which we are leading in partnership with Major League Baseball. Below is more information on how you can become part of baseball history and make a future without ALS a reality.

Thank you,
Steve Perrin,
Ph.D.Chief Executive Officer & Chief Scientific Officer
ALS Therapy Development Institute

More Advocacy...a note from Eddie Esparza, leader of Team IPLEX

All, with his permission, I am reposting a note that Edde originally posted to the ALS-TDI website. His and "Team IPLEX's" unyielding pressure has helped several people get IPLEX, and continues to work towards making it available to other PALS who would like to try it. Below, he gives a good overview of why we need more funding for ALS, and some detail on the shameful level of current spending on this by our Government. Thank you Eddie, you are a true Champion for our cause...

========Begin Eddie's Note=======

As everybody knows, the speed of any research depends (in part) on the amount that is invested into that particular disease's research.

If 100 laboratories worked on a particular problem, not only is the likelihood of success 100 times greater but the research should progress more rapidly. At the present, with NIH spending only $43 million per year on ALS research , we don't have enough of the best scientists in the United States working on the problem. When California starts investing >$300 million per year and New Jersey investing $30 million per year in the area, this will more than double the research in the field. Finally, if the Stem Cell Research Enhancement Act (SCREA) of 2006 were to pass, it would allow NIH to fund derivation of human embryonic stem cell lines.We need more funding for ALS research, but it's not going to happen by itself. At the present, NIH is spending less than $44 million per year on all ALS research, and that includes... rehabilitation.

Does anybody else feel that this is a pitifully/ shamefully small amount/investment? Achieving regenerative and remyelinative therapies for neurodegenerative diseases, spinal cord, etc. and getting them successfully through clinical trials is way more difficult and challenging than flying to the moon. It is estimated that it takes over $800 million to move one therapy from discovery to market. At this rate... well just do the math.

I don't know how true this is, but I recently read that, ALS costs the government (Medicaid, Medicare, etc.) just about, $1 billion per year. If this is true, you would think that the government/ Congress would be more than willing to consider investing 10% of this amount or $100 million per year to develop regenerative and remyelinative therapies. Note that such therapies will most likely be useful other peripheral nerve diseases, not to mention, spinal cord injury, etc.

But like I stated earlier, it ain't going to happen by itself. I will agree that, we are definitely a very small group, but I believe Team IPLEX, has already demonstrated on at least 2 separate occasions, that... "It's never, the size of the dog in the fight,... It's always, the Size of the Fight in the Dog."
Edward W. Esparza
(pals since 2005)

============End Eddie's Note============

Tuesday, May 5, 2009

Politics as usual...but we can change it...

My advocate hat is on. It is one of those huge sombreros with sequins and I've hung about a thousand lights on it. Its lit up like a huge doggone Christmas tree on Cinco de Mayo so get ready week is National ALS advocacy week and I'm advocatin'

You didn't ask for it, but here is my simplistic view of politics:

Society to Politician: "Sir, do you care about my cause?"

Politician to Society: “That depends, - will it get me (re) elected?”

Society either: “Yes, absolutely” or “If you don’t do anything about it, anyone that runs against you will likely get elected because we will hate you for not caring or for acting unresponsive.”

Politician: (conjures picture of George W Bush looking out the window of Air Force One a day or two after Katrina hit.) “Yes, I care deeply about your issue, how can I help you.”

In my opinion, today the Media still reflects the social consciousness of our society, and without their pressure, we will most likely fail to ever get the attention we need for politicians to care about ALS. So, how do we get the media aware of this scourge that hides among us and strikes out at those we love without warning or prejudice?

If they are so willing to jump on board with an overblown "flu pandemic" that is going to lay a few people up for a couple of weeks then I have hope that they might actually soon acknowledge ALS as a major problem. Why?

Because my wife has been laid up for TWO YEARS along with thousands of other people just like her living in this great land of ours. She has not taken a step on her own for fourteen months. She can't lift a fork to eat, she can't hug her kids, she can't do a thousand things we take for granted every day. There are THOUSANDS of people like her. Where is the press for them?

Luckily for us, there is a growing ability for groups like PALS (People with ALS) and CALS (Caregivers for People with ALS) to have a voice and the tool we use is the Internet. The Web, Social Media, Email, Discussion Groups. All of these things give us power that we have not had in the history of the printed or published word. It's not that President Obama is going to give a bubble fart about what "some blogger" like me says, but if enough people start talking about this, the press will pick up on it and make it into a story that he and the rest of the politicians can not ignore any longer.

When is the last time you saw a video of some jackass doing something stupid on Youtube re-run on your ten o-clock news? That is the power of social media I'm talking about. It's called "going viral." I live in this world of Internet media. Some of my clients would LOVE for some positive story about their company to go viral. Unfortunately, the ones that do go viral usually are the negative ones. Did you see the "Domino's Debacle" last week? That is a perfect example of social media going viral. Did those idiots working there have any idea that their dumb-ass video would cause as much harm as it did? Probably not, but that didn't stop them from making a most idiotic mistake of posting it in a public forum where people were disgusted enough to bring it up to the right reporter that "broke" the story.

The trick is that we have to spread the word amongst ourselves. Generally first to people to are directly affected, then to people that are peripherally affected, then to people that are only affected by the notion that spreading the word is good in some way and can help either for the sake of helping or for their own sake.

I've said it before in this blog that generally, people don't do anything really "active" or controversial unless they fear a consequence or have personal motivation. That motivation can be positive, such as love, righteousness or even patriotism. It can also be negative like hate, disdain, disgust or even greed, spite or any of the other "seven deadly sins."

I don't know what I can get YOU to do to promote the government to contribute more than a paltry pathetic sum to ALS research for a cure. If you are reading this, you probably already have done something. If not let me give you a little motivation:

1) H lived a very healthy lifestyle.
2) She is kind.
3) She is caring.
4) She does not have any family history of this.
5) She has barely ever even been sick.
6) She did nothing to deserve or contract this illness.

She woke up one day and couldn't buckle our daughters buckle on her backpack. A few months later, she was given a 2 or 3 years to live. No treatment options. No "Let's try this."

Nothing other than, "well we wish we could help, and when you need a feeding tube or need help breathing, let us know and we'll get you connected."

She was just like any healthy 38 year old woman, only better than most. If she can get it, so can you. So can I. So can someone you know, love or care about.

So please. Next week is National ALS advocacy week. Please do something about it. If you have a contact in the press, send them this blog. Contact your local ALS Association or Muscular Dystrophy Association. If you know a politician, send them this blog. Ask them to read my writings since January or the Hawaii blog or the Mayo blog. Surely some of those words will strike a chord with someone that will care.

If not for her sake, or my sake or the sake of our girls, do it for your own sake because this thing is not going away unless we all get worried about it enough to get those with the money to solve it to care. One of my ALS advocate buddies recently told me "ALS is not an incurable disease, it is an UNDERFUNDED disease." I would add to that it is a disease that most people don't really know about, and therefore don't really care about. 2 years and one month ago, I really had almost no idea what ALS was, and I consider myself a fairly well informed human being. You can't care about what you don't know about.

If someone copies and pastes this post into an email, here is a link to the first post of my blog: Go back in the archive and read it. I hope it not only shocks you, but also warms your heart. I think it will. If you do, you will catch up on what ALS is and what it does to people like my lovely wife.

The audience for this blog has reached people in 27 countries now. I want it to reach a million people in each of those countries, because if it does, I bet it will reach a lot more than that. ALS does not stop at our border. People are dying from it all over the world. People that are dying from it are getting taken advantage of every day by opportunists that see desperation as a quick and easy cash-flow lever, like a slot machine that hits triple sevens every time.

Thanks for indulging my rant tonight. Please don't take it personally, I'm just a little madder than usual. Oh and by the way, I HATE chain letters. If you don't forward this to ten people, NOTHING bad is going to happen to you. You just might feel a little better about helping us "desperadoes" out, and that is a good thing.