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.
b.
Friday, May 8, 2009
Dutch Bros Rocks...
Got a note back from Dutch Bros...Good people!
Bill,
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!
Adam
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---------
Bill,
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!
Adam
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: http://dutchbros.com.
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.
Peace.
B.
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: http://dutchbros.com.
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.
Peace.
B.
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.
Peace,
Bill
=============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
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.
Peace,
Bill
=============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...
Peace,
B.
========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."
Sincerely,
Edward W. Esparza
(pals since 2005)
============End Eddie's Note============
Peace,
B.
========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."
Sincerely,
Edward W. Esparza
(pals since 2005)
============End Eddie's Note============
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