Click http://www.youtube.com/watch?v=e6saCHr6d0k&feature=youtu.be
to watch Prize4Life’s latest video and hear
Doug Kerr MD, PhD, Director of Neurology R&D at Biogen Idec
talk about why he thinks now is “an exciting time for ALS”
Does anyone else think something is wrong with this picture???
I highly recommend listening to this interview for more education about ALS and why the ALS Treat Us Now group was formed … http://www.treatalsnow.org/Home_Page.php
Click Here and read/listen to this very informative interview …
http://hereandnow.wbur.org/2012/05/21/als-diy-trials
Monday, May 21, 2012
For slide show go to:
http://hereandnow.wbur.org/files/2012/05/0521_ben-harris-als.jpg
A group of people suffering from Amyotrophic Lateral Sclerosis (ALS)
or Lou Gehrig’s disease have started cooking up their own drug therapies in do-it-yourself drug trials.
Frustrated with the slow pace of clinical drug trials, they say they don’t have
the luxury of waiting.
Lots of family coming together for the last of our graduation events (I mean undergrad events) - although it appears there may be more graduate level events in our future.
Congratulations Sarah - we love you very much and are all so proud of you and what you’ve accomplished!!!
Although sometimes it may not seem so easy sometimes - you’ve had a great run so far - I want you to know that I am absolutely sure things will all fall into place and the future will be wonderful for you.
Schedule of Events
SATURDAY, MAY 19, 2012
11 a.m.
Class Valedictory Exercises on the Lawn *
Val Ackerman, (College ‘81), Cavalier basketball star and founding president of the Women’s National Basketball Association, will speak. University awards and the class gift will be presented.
* In case of inclement weather, Valedictory Exercises will be held in the John Paul Jones Arena.
12:30 - 2 p.m. President Sullivan’s Reception for members of the Class of 2012 and guests at Carr’s HillReception Rain Site: John Paul Jones Arena1 p.m. School of Nursing Hooding Ceremony in McLeod Hall Auditorium
2 p.m. Curry School of Education Hooding Ceremony for doctoral candidates in Culbreth Theatre
3 p.m. Joint Commissioning Exercises for Army, Marines, Navy, and Air Force Candidates in Old Cabell Hall Auditorium.
5:30 p.m. School of Nursing Pinning Ceremony in Old Cabell Hall Auditorium7 p.m. Donning of the Kente Ceremony in Culbreth Theatre
Tickets are required. Contact the Office of African American-Affairs at
434-924-7923 for more information.
9 p.m. - Midnight Fourth-Year Class Party in Alumni Hall - Light refreshments will be available. Tickets will be distributed at the University Bookstore May 17 through 19.
SUNDAY, MAY 20, 2012
9:30 a.m. Degree candidates gather at designated assembly
points near the Rotunda for Academic Procession.
* In case of severe weather, there would not be a combined Final Exercises for all the schools.
10 a.m. Faculty assemble at the Rotunda (southwest terrace) for Academic Procession.
10 a.m. Academic Procession and Final Exercises on the Lawn
* Katie Couric (College ‘79), journalist, author, and advocate for cancer research and therapy, will speak.
Following Final Exercises Diploma ceremonies for the individual schools and departments (Arts & Sciences) will follow at the locations and times listed on the diploma ceremony locations chart. See Diploma Ceremony Locations Chart
Please take the time to visit our new web site that is still under construction, digest our MESSAGE and let us know what you think …
Take the time to READ the Introduction and watch the videos in the Social Media section …
http://www.treatalsnow.org/Home_Page.php
================================
Next week (4/24 and 4/26) - myself, Michael Schwartz (individual with ALS and Chief of Staff for Senator Coburn of OK) and Andrew Gengos (President and CEO of Neuraltus Pharmaceuticals are heading up to Capitol Hill to meet with:
We are still working to meet with the following folks and are making good progress:
================================
Our Message:
Show your strong support for the newly introduced Bills above that will help ALS Patients live longer lives (S. 2113, S. 2236 and S. 2281) as well as urging members of the House of Representatives and the Senate to protect the inclusion of the accelerated approval process language in the latest draft of the Prescription Drug User Fee Act (PDUFA) reauthorization. The “accelerated approval process” is essential to spur the development of potentially lifesaving therapies for all individuals living with neuromuscular diseases.
Taking action takes less than 5 minutes, there is a template on the MDA website to help you get started. It’s easy — just open the tool, and click on the name of the bill to take action now!
================================
Patients of ALS and other fatal unsolved diseases are routinely told by experts that there is no hope for long term survival. With your help, we can change that outlook for today’s patients.
There is no cure for ALS, and the life-span for 90% of ALS sufferers is 2-5 years after diagnosis in the absence of potentially effective treatment.
Yet there ARE several existing drugs in clinical trials that are potentially effective treatments. These drugs have already demonstrated appropriate human safety and early signals of efficacy in ALS patients.
Smart, well-informed patients see these new drugs as chances of survival. But they die while waiting for access.
The vast majority of patients are ineligible or otherwise unable to participate in clinical trials.
There are other ways to allow dying patients access to unapproved drugs when medically appropriate. But these mechanisms are either ignored or perceived as unviable in nearly every case.
We’re here to change that. ALS Treat Us Now is the only ALS foundation dedicated to saving the lives of CURRENT patients by gaining them access to potentially effective investigational drugs.
Very interesting recent interview with Dr. Steve Perrin who is currently the CEO and Chief Scientific Officer at the ALS Therapy Development Institute (ALS TDI) in Cambridge, MA at —
http://www.proactiveinvestors.com/columns/one-med-place/1057/als-tdi-the-first-non-profit-biotech-a-hidden-investment-opportunity-1057.html
I think the most compelling part of this interview with Dr. Perrin was when he said:
========================================================
So, you know, if you look at the incidence rate of ALS compared to multiple sclerosis, it’s identical. There’s about 5000 new MS patients diagnosed per year. There’s about 5000 new ALS patients diagnosed per year.
There’s about 600,000 people walking around with multiple sclerosis and there’s only about 30,000 people with ALS, but that’s because MS now has seven disease modifying drugs that are FDA approved that patients can take and it slows down their disease and it improves their quality of life.
If we had seven drugs in the ALS space, you’d go from 30,000 patients to 300,000 or 400,000 patients really quickly.
In the MS space in the US is a $12B a year field for people that have invested in it. So the upside is huge. The first disease modifying drug could instantaneously become a billion-dollar product.
========================================================
Now perhaps everyone will have a good feel for why several of us on the slippery slope of ALS are attempting to mobilize a “Treat Us Now” campaign aimed at finding better ways to FIRST slow the progression and extend our lives … as opposed to just a focus on a “cure” as has been the traditional approach for the last 73+ years (that obviously hasn’t worked).
http://treatalsnow.org/Home_Page.html
http://www.facebook.com/pages/ALS-Treat-Us-Now/220968231317148
The meaning of Easter is Jesus Christ’s victory over death … I sometimes feel like I am also fighting for this type of victory and perhaps also winning so far.
I am very thankful for the opportunities thus far in this journey to be feeling closer to victory than loss and to still be able to do/accomplish “bucket list” type things that I thought might not be possible by this point.
Another ALS patient who has progressed in the disease much further than I recently asked me - How much r u affected by ALS?
I thought I might share my answer on this Blog …
==========================
Well I began noticing strange things (fasciculations, weakness in arms, shortness of breath, hard to do push-ups, etc.) in the early Spring of 2010.
I was diagnosed in December 2010 and I started the Dexpramipexole Clinical Trial in May 2011. I actually think I am better now than I was in May/June of 2011.
Here are my Patients Like Me (PLM) charts since March 2010 – these will give you a feel for how much (at least up to now) I have been affected:
The bottom bracelet reads: “NEVER EVER GIVE UP!”
HAPPY EASTER TO ALL!!!
Since being diagnosed with ALS in December 2010, I (and many others like myself) have developed a very extensive “network” within this community utilizing Blogs, email, Facebook, Tumblr, Twitter, LinkedIn, Patients Like Me, ALS TDI, the MDA and the ALS Association and other ALS related internet sites.
This network included Ms. Sherron Greene from Kaplan, LA (whose brother Kendall was diagnosed with ALS in January 2010) who was working with the “Treat Us Now” group and reached out for my assistance with some research and ALS points of contact at various medical facilities involved in ALS Clinical Trials … I wanted to be part of this “Treat Us Now” team … and the rest is history.
Although we have never actually met or even talked on the phone - I feel like I know Kendall Saltzman, his wife Delphine and his sister Sherron well enough to share this video on my Blog …
Please take the time to watch the complete video and you will begin to understand much better the urgency of our fight regarding compassionate use drugs for people with ALS …
http://www.youtube.com/watch?v=71xaIKbaync
After seeing this video and you haven’t already signed the petition that 7,937 other folks have already signed — please go and do it! Just click the link below:
http://www.change.org/petitions/corporate-citizens-fda-executives-neurologists-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now
Today, February 29, 2012, is Rare Disease Day. I just took action to raise awareness in the United States about people with rare diseases - it is really easy to do and can be done in less than 5 minutes.
Please take a few minutes and tell President Obama, Members of Congress and other elected officials that you care about people with rare diseases and wish them a bright future. Follow this link and submit your letter now. Then post the link on your Facebook, Twitter, Blog, Website etc. and encourage your friends and family to submit their letters too.
I have drafted the following for your use (cut and paste) when you get to the section that asks if you want to write something personal instead of just the form letter:
================================
The person with a rare disease I care about is Tom Murphy, 54 years old, from Gainesville, VA who was diagnosed with ALS on DEC 8, 2010.
- Married for 30 years on 8/29/2011 to Keri
- Proud Dad of 3 great children - Kristin (29), Tom (27) and Sarah (22)
- His son Tom and his wife Anna Kate became the proud parents of Harper Kate Murphy on 10/12/2011 at 12:08am
- Works for Parametric Technology Corporation (since Nov 2007) - has worked in the Defense Industry (Lifecycle Product Support) area for over 30 years.
- Graduated from Virginia Tech in 1981
- Long time athlete (baseball, basketball, football and rugby)
As the disease progresses, it will rob Tom of the ability to move his muscles. He will no longer be able to walk, move his arms or even blink an eyelid or breathe on his own. He will become trapped in a body that he can no longer can control; isolated and awake, aware of the world around him, yet unable to do anything about it.
I was actually shocked to find out that since 1939 (73 years ago) when Lou Gehrig made his famous speech at Yankee Stadium - there is STILL no effective treatment for ALS and it is fatal in just two to five years after diagnosis.
In 1988, Tom lost his 29 year old younger brother to AIDS and on 9/11/2001 he lost his 36 year old youngest brother in the North Tower of the World Trade Center. He is very lucky to have such loving and supportive family and friends at this crossroad in his life but it is terrible to think about what they will be put through in the near term due to Tom’s ALS condition – it seems that his family and friends have already been through their share of tragedy and now this …
Many of us in the ALS Community have very recently formed a grass roots “ALS-Treat-Us-Now” initiative and as of this date we have 6,510 supportive petition signatures.
Our Mission statement:
As ALS patients, their caregivers and friends we are committed to accelerated access to treatments that will slow progression or provide a cure.
Our Goals:
1. To assure compassionate access for ALS patients to treatments that have demonstrated in Phase II trials the ability to slow progression or cure ALS.
2. To cooperate with all willing ALS stakeholders.
3. To assure that funds are made available to allow patients compassionate access to treatments.
For people with ALS, the issue is that the large majority of them will not live long enough or progress slow enough to take part in or qualify for participation in Clinical Trials given the traditional length of time to get to FDA approval and access to treatments proven to be safe and have some degree of positive effectiveness.
SEE:
- https://sites.google.com/site/alstreatusnow/8-key-points-discussions-with-alstdi-and-others
- http://www.change.org/petitions/corporate-citizens-fda-executives-neurologists-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now
- https://sites.google.com/site/alstreatusnow/home/how-to-help-us-move-forward
Why This Is Important
As a community of people with ALS, their caretakers and their friends - we are advocating for the acceleration of ALS treatments that will slow progression.
ALS, sometimes referred to as Lou Gehrig’s Disease, is a progressive, fatal, neurodegenerative disease with most people dying within two to five years of diagnosis.
Terminally ill patients with little to lose want access to what is available that has shown safety and efficacy as soon as possible. We believe that Phase 2 drugs showing safety and efficacy, such as Dexpramipexole, and NP001, as well as off label treatments such as Tamoxifen, should be made available to people with ALS through Compassionate Use Now.
Well I’ve never been a very good spectator or a very good “passenger” …
Last year I was a spectator for this event but I’d really like to ride this year if all the Doc’s at the University of Virginia give me their blessing (can’t imagine them saying NO as long as I don’t overdo it) … I’m pretty sure I won’t be able to do 270 miles but I’ll do as much as I can each day …
I’ve decided that i don’t really like the “Conserve to Preserve” methodology for ALS folks after doing it for a year now — I’ve actually started “training” each day for the last 2 weeks (a little at a time) and I feel alot better and alot stronger …
Below is my recently acquired stationary exercise bike that I’ve been riding about 20 minutes per day so far at about 18.5 mph — not so easy after a long layoff …
I’ve also begun to use the abdominal equipment, the 60lb resistance tubes and the 20 lb hand weights below in attempt to regain some strength —- and I think it is actually working very well —- I feel tighter and stronger every day that I do these exercises …
My son Tom and my brother-in-law Tony are contemplating forming a Tri-State Trek MURPHY’S MIGHT “Team” and we will be looking for volunteers to ride, sponsors and folks to help us raise funds for ALS research and awareness.
I recently got involved in a very important initiative aimed at attempting to accelerate the authorization and availability of Compassionate Use Drugs for ALS patients and sent this note to over 500 people:
=====================================
Please take a moment and Go to Change.org — http://www.change.org/petitions/corporate-citizens-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now — to support this critical initiative and sign this petition …
As a community of people with ALS, and their caretakers, we are advocating for the acceleration of ALS treatments that will slow progression.
ALS, sometimes referred to as Lou Gehrig’s Disease, is a progressive, fatal, neurodegenerative disease with most people dying within two to five years of diagnosis.
Terminally ill patients with little to lose want access to what is available that has shown safety and efficacy as soon as possible. We believe that Phase 2 drugs showing safety and efficacy, such as Dexpramipexole, and NP001, as well as off label wf10, should be made available to us through Compassionate Use Now.
Join us in calling for COMPASSIONATE USE DRUGS FOR ALS PATIENTS NOW!
Thanks so much!
V/r,
Tom
Tom Murphy
703.395.3615
========================================
I sent this note to the folks at the ALS Association on the same day:
Is there any chance that the ALSA would support this initiative and possibly use your master mail list that has all the folks who made contributions to the ALSA Walks across the country in 2011?
It would sure help us to get to the 10,000 signature level that we want.
Your support would be greatly appreciated by all of us 3,400+ that have already signed the petition.
V/r,
Tom Murphy
======================================================
I’d like to share with you the disappointing response I received some 4 days later from the ALS Association and my subsequent response below:
=====================================
Dear Tom,
I’m afraid our Chapter isn’t going to be able to forward the petition calling for compassionate use drugs for ALS patients to our constituents, as you requested in your email earlier this week. I can only imagine how strongly you feel about this issue and am both sorry and sad to have to disappoint you. However, just today, The ALS Association released the following statement, which explains our position on the issue.
Ted Harada and folks from the national Association are going to be speaking about this issue next Wednesday, so you may want to follow up with Ted next Thursday or Friday.
Statement on Compassionate Use for Dexpramipexole
In our quest to create a world without ALS, The ALS Association believes that people with ALS should have access to effective treatments as quickly as possible. Our first core value is that people with ALS and their families come first in everything we do. When it comes to advancing therapies for ALS, we work with all stakeholders in an effort to find the best path forward.
We realize that time is the most precious commodity for people living with ALS. For this reason, we are working closely with Biogen Idec and other companies developing potential treatments for ALS. Our goal is to facilitate clinical trials and accelerate the availability of treatments, including access to compassionate use programs. As a result of the effort, we are pleased to report that Biogen has indicated that they will provide compassionate use access to dexpramipexole as soon as data becomes available showing that the compound is effective and safe in the larger Phase III study.
The ALS Association is committed to helping make promising treatments available as quickly as possible. We will continue to communicate with Biogen and other organizations about the needs and concerns of people with ALS and their families. In the meantime, it is absolutely critical that people with ALS continue to participate in clinical trials. Ultimately, patient enrollment and participation in clinical trials is the only way to determine the effectiveness of treatments for this devastating disease.
Respectfully,
Ronnie Gunnerson
Executive Director
ALS Association – DC/MD/VA Chapter
7507 Standish Place, Rockville, MD 20855
(301) 978-9855 | 1-866-348-3257 Ext. 204
Fax: (301) 978-9854
RGunnerson@alsinfo.org
www.ALSinfo.org
=======================================================
My immediate response to this very disappointing “statement” from the ALS Association was as follows:
“Very disappointing to say the least … it seems to me lately that the ALSA folks aren’t really hearing the many voices of the folks you serve …
This statement/position doesn’t make much sense to me and doesn’t really seem to explain WHY the ALSA doesn’t support this specific movement for Compassionate Use Drugs for ALS Patients.
I’ll make sure to let everyone in my network know the ALSA position on this.”
I feel that most of us who are already on trials aren’t looking to drop out of these trials (most of us know that we will eventually be put on the real thing if the trial results are positive) – we understand the risks and the benefits to the rest of the ALS patient population – the targeted population of this initiative are those thousands who were not selected or couldn’t qualify for the studies or were recently diagnosed – this is such a fast moving disease in some cases that while folks wait for the next trial or the start of a Phase 3, a year or more in time may pass and by that time they may have progressed to the point where they won’t qualify to participate.
The theme of this initiative is as follows:
Terminally ill patients with little to lose want access to what is available that has shown safety and efficacy as soon as possible. We believe that Phase 2 drugs showing safety and efficacy, such as Dexpramipexole and NP001, as well as off label wf10, should be made available to us through Compassionate Use Now.
Seems to me like the entire human population of the planet Earth would be very supportive of this type of thing for terminally ill patients with ALS.
What would be wrong with finding a way to address the thousands of folks who were not selected for the trials due to study limits or couldn’t qualify for the studies just because they were diagnosed more than two years ago or those that were recently diagnosed with ALS and have to wait for the end of an 18-month Phase 3 study? What is the worst thing that could happen?
That’s my point of view and I would have thought that the ALSA would have had a somewhat similar thought process about this.
V/r,
Tom Murphy
For those who could not get to the video of my granddaughter Harper Kate …
Don’t want anyone to forget that I’m a new Grandpa …
Harper Kate was born on 10/12/2011 … getting close to 4 months old now.
Recent Note from the proud parents of Harper Kate (Anna Kate and Tom):
January 22, 2012
Hello! Sorry there hasn’t been an update in a while. Things are a little busy around here :) As you can tell from the recent videos, she has found her voice and at no surprise to us, she does not hesitate to use it!! She is a very busy girl and curious about everything. She has started to pay attention to Buck (Buck is the Boxer - her “brown brother” as we like to say) and she even grabbed his ear the other day. He was pretty shocked, but sat very still until she was done. Harper has started putting things in her mouth and she really likes Sophie the giraffe (a teething toy). Someone else really likes that Sophie squeaks like one of his toys so Sophie has gone through the dishwasher a couple of times on the sanitize wash. Harper has also been practicing basketball with her daddy. She can’t even hold the ball in her hand, but he is determined that she learn early! This is another toy Buck likes to steal from her. Overall, she is doing very well!
Here are a few pictures from the past two weeks!
For a cute recent video - check out http://harperkatemurphy.shutterfly.com/pictures/211
A new year is here — hard to believe how quick it went — when I think back to last December 2010, I would never have thought that I would be this lucky at this point in time.
Had my 4th ALS Clinic Visit on 1/5/2012 (go about every 4 months - 1st one was at GW University and last 3 at University of Virginia) … all the Doc’s and specialists seemed impressed with the slow progression - they think I must not be getting the placebo … I’m actually hoping that I am on the placebo (just imagine how slow the progression would be then!) … with the exception of my hands (very annoying not to have the normal fine motor skills I’ve always enjoyed) - It seems I’m doing fairly well given that my first signs of ALS were in the Spring of 2010 or perhaps earlier.
I’ve been on the “Study Drug” for 7 months now with 11 more to go - being seen (blood draws, vitals, strength tests, pulmonary tests, etc.) at the University of Virginia on the odd months and at my home on the even months …
My updated Patients Like Me charts below - I sometimes wonder what made the last 3-4 months stay so steady … must be good times, positive thinking (most of the time) and the special people who you count on every day that influence both of those things.
Maybe you all remember my post of July 10, 2011 about Dudley Clendinen and his article: THE GOOD SHORT LIFE?
Well here’s an update to that very thought provoking article related to euthanasia and ALS …
==========================================
PRINCETON - Dudley Clendinen, a writer and journalist, has amyotrophic lateral sclerosis (ALS), a terminal degenerative illness. In The New York Times earlier this year, he wrote movingly both of his current enjoyment of his life, and of his plan to end it when, as he put it, ‘the music stops - when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this.’
A friend told Clendinen that he needed to buy a gun. In the United States, you can buy a gun and put a bullet through your brain without breaking any laws. But if you are a law-abiding person who is already too ill to buy a gun, or to use one, or if shooting yourself doesn’t strike you as a peaceful and dignified way to end your life, or if you just don’t want to leave a mess for others to clean up, what are you to do? You can’t ask someone else to shoot you, and, in most countries, if you tell your doctor that you have had enough, and that you would like his or her assistance in dying, you are asking your doctor to commit a crime.
Last month, an expert panel of the Royal Society of Canada, chaired by Udo Schuklenk, a professor of bioethics at Queens University, released a report on decision-making at the end of life. The report provides a strong argument for allowing doctors to help their patients to die, provided that the patients are competent and freely request such assistance.
The ethical basis of the panel’s argument is not so much the avoidance of unnecessary suffering in terminally ill patients, but rather the core value of individual autonomy or self-determination. ‘The manner of our dying,’ the panel concludes, ‘reflects our sense of what is important just as much as do the other central decisions in our lives.’ In a state that protects individual rights, therefore, deciding how to die ought to be recognised as such a right.
The report also offers an up-to-date review of how assistance by physicians in ending life is working in the ‘living laboratories’ - the jurisdictions where it is legal. In Switzerland, as well as in the US states of Oregon, Washington, and Montana, the law now permits physicians, on request, to supply a terminally ill patient with a prescription for a drug that will bring about a peaceful death. In The Netherlands, Belgium, and Luxembourg, doctors have the additional option of responding to the patient’s request by giving the patient a lethal injection.
The panel examined reports from each of these jurisdictions, with the exception of Montana (where legalisation of assistance in dying occurred only in 2009, and reliable data are not yet available). In The Netherlands, voluntary euthanasia accounted for 1.7 per cent of all deaths in 2005 - exactly the same level as in 1990. Moreover, the frequency of ending a patient’s life without an explicit request from the patient fell by half during the same period, from 0.8 per cent to 0.4 per cent.
Indeed, several surveys suggest that ending a patient’s life without an explicit request is much more common in other countries, where patients cannot lawfully ask a doctor to end their lives. In Belgium, although voluntary euthanasia rose from 1.1 per cent of all deaths in 1998 to 1.9 per cent in 2007, the frequency of ending a patient’s life without an explicit request fell from 3.2 per cent to 1.8 per cent. In Oregon, where the Death with Dignity Act has been in effect for 13 years, the annual number of physician-assisted deaths has yet to reach 100 per year, and the annual total in Washington is even lower.
The Canadian panel therefore concluded that there is strong evidence to rebut one of the greatest fears that opponents of voluntary euthanasia or physician-assisted dying often voice - that it is the first step down a slippery slope towards more widespread medical killing. The panel also found inadequate several other objections to legalisation, and recommended that the law in Canada be changed to permit both physician-assisted suicide and voluntary euthanasia.
Surveys show that more than two-thirds of Canadians support legalisation of voluntary euthanasia - a level that has held steady for several decades. So it is not surprising that the report received strong backing in the mainstream Canadian media. What is more puzzling is the cool response from the country’s political parties, none of which indicated a willingness to support law reform in this area.
There is a similar contrast between public opinion and political (in)action elsewhere, including the United Kingdom, Australia, New Zealand, and several continental European countries. Why, when it comes to dying, do democratic institutions so often fail to translate what people want into legislation?
I suspect that, above all, mainstream politicians fear religious institutions that oppose voluntary euthanasia, even though individual believers often do not follow their religious leaders’ views. Polls in various countries have shown that a majority of Roman Catholics, for example, support legalisation of voluntary euthanasia. Even in strongly Catholic Poland, more people now support legalization than oppose it.
In any case, the religious beliefs of a minority should not deny individuals like Dudley Clendinen the right to end their lives in the manner of their own choosing.
Peter Singer is a professor of bioethics at Princeton University and Laureate Professor at the University of Melbourne. His books include Animal Liberation, Practical Ethics, The Expanding Circle, and The Life You Can Save.
Better news today … In addition to the $6.4M for Peer-Reviewed ALS Research - there was an additional $10M appropriated for Gulf War Illness Research — that includes ALS!!
Things are looking up!
WASHINGTON – Congress has approved dedicating $10 million to research the mysterious Gulf War illness, ending concerns from veterans’ groups that the money would disappear because of budget problems.
By Ken Lambert, The Seattle Times, via AP
“There is an urgency” to finding a treatment for vets, says Rep. Dennis Kucinich.
By Ken Lambert, The Seattle Times, via AP
“There is an urgency” to finding a treatment for vets, says Rep. Dennis Kucinich.
The spending bill passed by the Senate on Saturday and signed by President Obama includes the money for specific research into the series of ailments suffered by veterans of the Persian Gulf War. Originally, money for the research would have to come from a larger pot of money that could have been spent on other work besides studying Gulf War illness.
Rep. Dennis Kucinich, D-Ohio, led House efforts to restore the money. He told USA TODAY that sick veterans had called from their beds to ask members of Congress to approve the funding.
“When one out of three who served is affected, and when some veterans’ maladies are turning into long-term health problems like ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease), and when researchers are getting closer every single year to finding a treatment with this program, there is an urgency,” Kucinich said. “It’s comparatively little money that is doing an extraordinary amount of good and is the best hope we have for them.”
About one in four Gulf War veterans have developed chronic headaches, widespread pain, memory and concentration problems, persistent fatigue, gastrointestinal problems, skin abnormalities and mood disturbances, said Sen. Bernie Sanders, I-Vt., who also pushed for the funding.
The possibility of cuts came just as researchers in the peer-reviewed Congressionally Directed Medical Research Program had begun making progress on possible treatments.
The research is different because it is not directed by the departments of Defense orVeterans Affairs. For years, Veterans Affairs focused its research on the mental health issues of Gulf War veterans, rather than assuming a physical cause, and the Defense Department stopped funding research on Gulf War research several years ago.
Recent research suggests the cause may be the bug sprays, anti-nerve-agent pills and sarin gas troops were exposed to, and treatments targeting that possibility have shown promise. One study funded by the Congressionally Directed Medical Research Program showed that coenzyme Q10 appeared to relieve some Gulf veterans’ symptoms.
“It’s reassuring to see that members of Congress of both parties remain strongly committed to finding treatments for Gulf War illness, as the Institute of Medicine says can still likely be done with the right research,” said Jim Binns, chairman of the federal Research Advisory Committee on Gulf War Veterans’ Illnesses.
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