Thank you, Drew Brees!
Saturday, December 31, 2011
Sunday, December 18, 2011
Saturday, December 17, 2011
Thursday, December 15, 2011
Please spread the word to all who have lost loved ones to ALS in the last year. The holidays are rough, and this is a good way to remember and teach others about the toll that this beast of a disease takes.
Wednesday, December 14, 2011
ALS certainly poses a completely different set of challenges for the drug companies trying to move a therapy forward, yet the question about remembering the patient has a special sting with ALS.
Thursday, December 8, 2011
There has been an interesting saga described on the forum at patientslikeme.
A man with ALS recently made arrangements to go hundreds of miles to Cleveland to have the DPS described in the article at the above link "installed."
At the 11th hour in Cleveland his insurance carrier denied this treatment. He packed up his things and went back home.
Note that this man has ALS and travel is difficult and the breathing that he is trying to preserve with the DPS diminishes every day in the relentless ALS downhill slide.
Now he has finally found out what the difficulty was with the insurance coverage. The insurance company was not aware of the FDA approval of the DPS for ALS. The insurance company hasn't learned how to Google? Everything is fine now and he can go back to Cleveland for the procedure.
No, everything isn't fine now. The patient was jerked around by a healthcare delivery system that included an insurance company that made a big mistake at his expense. Precious time was lost. Precious resources were spent by the patient because an insurance company made a big mistake.
Nothing is easy with ALS, and we have a healthcare delivery system that continues to show its weaknesses at the expense of people trying to deal with this disease. Just as they introduced stress tests for banks during the banking crisis, perhaps ALS could be the stress test for healthcare delivery. Few organizations would pass.
Wednesday, December 7, 2011
Saturday, December 3, 2011
I have a slightly different perspective than most coming from the radiation oncology field. The things we put our patients through would seem downright medieval to most. We expose people to enormous amounts of radiation that often makes them so sick they almost die form it. We have perfected the dose to bring them to the edge of death but not beyond. We all know what chemotherapy patients go through. They lose all the cells in their stomach and can barely eat for weeks. Again, we bring these people to the brink of death because that is what it takes to kill the cancer cells.
People with ALS are in no less dire straits than people with cancer. Getting sick from a potentially life saving cure should not deter us from trying. No doubt there is a risk with this sort of thing, perhaps even death, so only those willing to risk it all should attempt it, but we risk it all by doing nothing.
Thursday, December 1, 2011
If any of the ALS delegates or researchers went to see Bono light up Sydney, lets hope that they went to be inspired and not simply entertained.
Monday, November 28, 2011
Saturday, November 26, 2011
Monday, November 21, 2011
Friday, November 18, 2011
Friday, November 11, 2011
Tuesday, November 8, 2011
Perhaps this Veterans' Day we need to stop patting ourselves on the back for the past work done for veterans with ALS and start fixing a few things!
Sunday, November 6, 2011
Thanks, Walgreens and NOVA, for helping good business intersect with vital ALS awareness in today's ad.
Wednesday, October 26, 2011
Friday, October 21, 2011
Thursday, October 20, 2011
Here is some perspective on a "birthday" and on keeping our eyes on the prize --
Let's make this registry work to provide the epidemiological clues that scientists need. Let's not sing until the data speak.
Tuesday, October 18, 2011
If you are a veteran who has ALS or you have lost a loved one to ALS who served in the military, please add a picture. This will give the mysterious connection between military service and ALS some much-needed visibility!
Please pass this word along. Thank you.
- Some neurologists aren't current on the status of clinical trials. Some neurologists discourage clinical trial participation lest the trial may do harm to the patient (like ALS isn't the ultimate harm). Some neurologists advise patients only of clinical trials in which they are investigators. Some neurologists advise patients only of clinical trials in which they are not investigators. Some physicians have the human "not invented here" frailty. Patients shouldn't stop with the neurologist. Ask questions and ask more questions and contact the Clinical Trials Expert (who is a physician sponsored by several ALS organizations and should be able to provide objective information) email@example.com or (877) 458-0631. That contact information isn't easy to find on any organization's website, yet it's probably one of the single most important resources for a patient who might qualify for a clinical trial. Go figure. Nothing is easy with ALS.
- Going to the ALS Association website isn't going to provide you with a current or comprehensive list of clinical trials. Try www.clinicaltrials.gov and search for "amyotrophic." There you will find the most current list of trials and their locations and current status. It's a more up-to-date database of trials than any other organization's website provides.
- Look at forums at www.patientslikeme.com (also includes patient data reported by patients in formal clinical trials and in diy treatments) and www.als.net and www.alsforums.com ... and realize that not everybody there is an expert (and it's always easy to fall into the trap of listening to what you want to hear)... but you may find some information that will help you make a more informed decision about a clinical trial.
- Time is of the essence. Many trials limit participation to those within 24 months of onset. Many patients have lost much of that eligibility window just trying to get a correct diagnosis.
Monday, October 17, 2011
Thanks to the organizers and the organizations for finding a practical and considerate way to deliver information for patients, families, and other interested people.
Friday, October 7, 2011
Thursday, October 6, 2011
Tuesday, October 4, 2011
Wednesday, September 28, 2011
CNN covers news from the Neuralstem Phase I trial --
Tuesday, September 27, 2011
It's troubling to see such expensive "feature-itis" growing from a project that needs to be focused on a successful core mission.
Sunday, September 25, 2011
Tony Proudfoot (CFL)
Friday, September 16, 2011
Sunday, September 11, 2011
Saturday, September 10, 2011
Below are some organizational perspectives.
National Health Council Announcement
The National Health Council applauds the FDA for agreeing to include in its recommendations three proposals championed by patients: the development of an objective, qualitative benefit-risk framework that includes robust patient input; the advancement of new therapies through the expanded use of biomarkers and patient-reported outcomes in clinical trials; and the creation of regulatory policy, procedures, and guidance to encourage the development of treatments for rare diseases.
All three of these components are necessary for advancing access to desperately needed treatments and cures. To exclude any one of these elements would be to offer a reauthorization package that would not meet the needs of patients – particularly those with few or no treatment options.
Since July 2010, The ALS Association participated in monthly meetings with FDA officials to bring the perspective of people with ALS to the discussion on the reauthorization of PDUFA. Three key provisions advocated by The Association were included in the proposed agreement. They include:Comments From A Pharmaceutical Industry Representative•Developing Treatments for Rare Diseases: Directs FDA to issue regulatory policies and guidance that encourage the development of drugs to treat rare diseases and to include patients as active participants in this process.
•Assessing Risk-Benefit: Instructs the agency to develop an objective and qualitative framework for assessing risk and benefit during the drug review process and to ensure patient involvement. The provision takes into account the fact that people with ALS who have no treatment options and who will die in just two to five years have a much different view of risk and benefit than does someone with a treatable or chronic condition.
•Utilizing Biomarkers in Clinical Trials: The proposal encourages greater use of biomarkers and other markers, or “sign-posts,” to help determine risk and benefit when reviewing new drugs. Biomarkers have the potential to significantly accelerate access to new drugs by helping to determine much sooner whether a treatment works and in which patients.
PDUFA is only part of larger FDA reforms needed to improve public health.
It's not a done deal. There are aspects that are a matter of life and death for people with ALS who are currently without an effective treatment and without a biomarker. It's important that we all pay attention as this proposal moves forward. Mission has not been accomplished.
Also, for ALS, a disease without biomarkers, are we going to slow down trials that might be mixing biomarker theories with efficacy theories? Sure, it would be great to use proven biomarkers in efficacy trials, but ...
Thursday, September 8, 2011
Don't you love it when the plot really thickens?
Saturday, September 3, 2011
Tuesday, August 30, 2011
By Ron Leuty in the San Francisco Business Times
Neuraltus ALS drug wins FDA orphan and fast-track status!
Now to fill the few remaining seats in the trial so that we can see how fast the fast-track is.
The meeting notes from the 2010 annual ALS Registry meeting were put on the CDC's website last week, over nine months after the meeting.
We believe that the 2011 meeting may be happening this week. We hope that it doesn't again take almost a year to see the summary of the proceedings. People with ALS don't have that kind of time to wait!
Monday, August 29, 2011
Please spread the word. This is a great opportunity to raise some critical ALS awareness and have a little fun, too.
Friday, August 26, 2011
You need to get to a neurologist doing clinical trials because anything the
least bit "promising" would be experimental.
Jose Biller, M.D. upon diagnosing a patient with ALS in 1996
That was guidance that unfortunately not every patient hears on the day of diagnosis. It is important because every patient deserves the opportunity to make informed decisions regarding options to fight the incurable disease and to contribute to the knowledge of that disease for future patients. Those informed decisions cannot be made after the window of clinical-trial eligibility has slammed shut, and in the case of ALS, many patients are not even diagnosed until much of their eligibility window has passed. After 24 to 36 months after first symptoms, even if you're lucky enough to still be alive and kicking, most clinical trials won't accept you.
People with ALS get spotty information from their neurologists regarding clinical trial opportunities. Some are actually discouraged because a trial might have bad side effects. Some docs don't mention trials outside of their own institutions. Others don't mention clinical trials at their institutions. This is nuts. People with ALS are perfectly capable of making their own medical decisions. Having information is a critical part of making medical decisions. Withholding information does not help.
There is a well-kept secret that can be of immense help to patients and families who would like to make their own informed decisions. There is a clinical trial expert available via email at firstname.lastname@example.org or via phone at (877) 458-0631 Monday through Friday, 9 a.m. - 5 p.m. eastern time. This person is a physician and is knowledgeable on all ALS clinical trial possibilities. The position is funded by ALSA and NEALS (an ALS clinical trial incubator) and is a source for objective information to assist patients in their decisions.
Last week a message board told of a patient who was pursuing a clinical trial that was filling fast. She could not get a response from the investigator's email contact at clinicaltrials.gov. She contacted the clinical trial expert and got some action. That's progress!
Thursday, August 25, 2011
Moving Pictures, Inc. (MPI) has doubled the percentage of their profits that they donate to Alzheimer's and dementia research, excited by the recent scientific breakthrough from Northwestern University. A new University study published in Nature identifying evidence of a common cause in all forms of amyotrophic lateral sclerosis (ALS, better known as Lou Gehrig's disease), a neurodegenerative disease causing fatal paralysis, opens a door to a cure for a disease that has long stumped scientists.
Tuesday, August 23, 2011
Saturday, August 13, 2011
Friday, August 5, 2011
Mike keeps fighting for our country in ways that he never expected.
Thursday, August 4, 2011
Wednesday, July 27, 2011
Tuesday, July 26, 2011
- http://www.clinicaltrials.gov/ has traditionally been the best database of clinical trials, yet it was not completely accurate on the eligibility window for one ALS trial. Since ALS patients are seldom diagnosed quickly (that's a whole other story), they often have very little time in their clinical-trial eligibility windows by the time they know they have ALS. It's a big deal if a trial will accept patients up to 36 months (rather than 24) from onset. Patient communication to the trial sponsor resulted in an important update to an important clinical trial's listing -- Neuraltus NP-001 -- http://www.clinicaltrials.gov/ct2/show/NCT01281631?term=neuraltus+amyotrophic&rank=1
- A new location was announced for the same clinical trial and within hours, our patient mapmaker had updated his work and communicated it to dozens of ALS websites.
- Several patients chided ALSadvocacy for not being more specific when referring to an important phase III trial in a prior posting. Here you go. -- Biogen Idec Dexpramipexole http://www.clinicaltrials.gov/ct2/show/NCT01281189?term=dexpramipexole&rank=3
- The facebook commentary regarding clinical trials has increased significantly. Patients are encouraging each other to "try out." Patients may or may not qualify, depending on how much damage the ALS has already done to them. The support and information being exchanged on facebook are impressive.
- Patients are hearing from their own trial coordinators of an uptick in inquiries based on patient referrals.
- Some trials provide unadvertised assistance with travel expenses. Patients are learning to ask.
- Finally, there are rumblings that some ALS organizations may finally be working together to make a single best information source of clinical trial possibilities. Based on past performance, that's a refreshing new goal to prove that it really is all about the patients. If a reliable, up-to-date, easy-to-use source of ALS clinical trial information emerges, then there may still be hope that all organizations might cooperate on having one excellent source of information. Patients have been begging for inter-organizational cooperation for years. This is a chance to help patients and leverage resources.
- There continue to be reports of large groups of patients at support groups and clinics who are not being informed of clinical trial options by their organizations and healthcare professionals.
- The online information regarding clinical trials has been updated on some ALS organization sites but not on others, and obsolete information is worse than no information! ALSA chapter sites are not accurate at this time. There is an old saying that everything is harder with ALS, and this is an ironic source that reinforces the adage. ALSadvocacy hopes that organizations will remove the red-herring information and simply supply a link to http://www.clinicaltrials.gov/ct2/results?term=amyotrophic&recr=Open It's all about the patients, right? It seems unconscionable that a patient might miss a trial opportunity based on wrong information on a trusted organization's site.
- Not all trial locations supply email addresses in addition to phone numbers for the contact people. A disease that steals the ability to speak would be served well with more appropriate communication options for patients to inquire about clinical trials.
- Clinics that are holding trials may occasionally be forgetting to tell patients about other clinical trial options that are available elsewhere. In the same vein, are not-for-profit trial sponsors forgetting to tell patients about trials sponsored by for-profit pharmaceutical companies?
Thursday, July 21, 2011
Right now there are some very interesting clinical trials being conducted for ALS. Over the years there have been hundreds of such "promising" trials, always with the quotation marks around "promising," and the disappointments and failures have been heartbreaking. This year it seems different. There are anecdotal reports of improvements in one trial. There is another that is a Phase III trial. Both are being led by some of the finest neurologists throughout the country. After all of the recent buzz and hope of finally removing the quotation marks from "promising," one fact remains -- we'll not know if these drugs will live up to the promise until the clinical trial seats are filled and the trials are completed.
One would think that patients with an untreatable, terminal disease would be knocking down the doors to get to these clinical trials. One would think. It seems that the process for getting information to ALS patients regarding clinical trials is horribly flawed. Many rely on their neurologists for information and guidance, yet often trials aren't introduced to patients and when they ask, the physician may not be familiar with the possibilities. Many rely on their trusted ALS organizations for information and guidance, yet we find a melange of outdated and incomplete information on their websites.
In the last few weeks, we have seen patients enrolled in trials taking matters into their own hands with some impressive results. Any patient who is enrolled in a clinical trial can be highly motivated to get the other seats in that trial filled so that it can move ahead. We see patients contacting others via social networking to encourage and inform regarding trials they are in. We see patients and caregivers asking trusted ALS organizations to speak up to patients regarding enrolling trials (and there have been some results). We see patients contributing to information online so that their peers can understand the relative advantages and disadvantages of trials. We even saw one patient who had traveled away from home for his monthly clinical trial infusion who dropped into a support group meeting in the clinical trial city. He found peers who were not aware of what was happening in their own back yard. One patient published a map online to show his peers all of the cities offering his trial. Facebook friends are posting information on walls wherever people with ALS and families might visit, and patients who do not qualify for trials are being a huge help to spread the word to others who might. Patients are posting their data at http://www.patientslikeme.com/ so that others may learn.
The system for spreading clinical trial information is broken. Some say there is no system. There is no excuse for a patient who qualifies for a clinical trial to be unaware of the possibility. Patients are leading the way right now. We hope that organizations and clinics and physicians will follow their lead and step it up a notch or ten!
Wednesday, July 20, 2011
Tuesday, July 19, 2011
Monday, July 18, 2011
Also, there is a beautifully written feature in USA Today by Liz Szabo --
Friday, July 15, 2011
Saturday, July 9, 2011
Diesel Pete made this college freshman think that national championships were the normal part of a college football experience. Many years later he showed this ALS advocate the meaning of courage when facing this beast of a disease.
Another of our best and brightest has been taken. When will we stop this madness?
Friday, July 8, 2011
Over the last several weeks there have been early reports of some positive results. It's way to early to know if early reports mean anything, but it is a most encouraging buzz among some of the trial participants.
If you have ALS or if you know someone with ALS, this Neuraltus NP001 trial might be worth some serious consideration. One must be within 36 months of disease onset to be eligible. If travel is required to get to a trial site, we understand that there is some assistance available.
We hope and we pray that this portends a viable treatment for ALS that can be delivered quickly. Around 500 Americans with ALS die every month.
Wednesday, July 6, 2011
I'm writing to you because I hope will will help spread the word about a remarkable man taking on a remarkable effort for the benefit of ALS research .....
In August, Doug McConnell, 53, of Barrington, Ill, will attempt to become the 48th person over the age of 50 to successfully cross the temperamental English Channel. He will be swimming more than 21 grueling miles in memory of his father who passed away from ALS (Lou Gehrig's disease). Doug is using this epic effort to educate the public about ALS and raise funds for medical research at Northwestern University ’s Feinberg School of Medicine in Chicago.
McConnell truly loves swimming and appreciates physical challenges. As a child, during a family vacation to England, he saw the Channel and thought to himself that one day he'd swim across the busy waterway. He and friend Don Macdonald committed to this endurance challenge and have been training for this event for approximately two years.
In late 2009, Doug developed a medical setback – a severely herniated disc between two cervical vertebrae, resulting in the loss of all use of his left arm. After physical therapy and other unsuccessful treatments, Doug underwent a cervical disc replacement procedure. The surgery was successful. Today, Doug has regained strength in his arm and the ability to move his neck to breathe while swimming, and he swims without pain. This was not enough to stop Doug's pursuit of his dream.
Medtronic, the manufacturer of the disc that was implanted into Doug's body, has pledged up to $50,000 in support of Doug's efforts. He is well on his way to raising a significant amount of money.
We hope you will post the press release on your blog. Please feel free to contact me with any questions or if you need additional information.
Les Turner ALS Foundation
Tuesday, July 5, 2011
...He talked about how CFF’s successes – more than 30 drugs in the development pipeline, four of them already FDA-approved – have been a result of holding its partners’ feet to the fire, and keeping patients at the table every step of the way to create the urgency Feigal talked about.
But it goes beyond just having a seat at the table. While patient presence is critical to humanizing research and speeding progress, patient voices can’t just be loud, they also have to be smart on the science and knowledgeable about the regulatory environment. The recently released paper Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change, co-authored by FasterCures and HCM Strategists, distills lessons learned from the HIV/AIDS movement that can be replicated to address today’s medical research advocacy challenges. HIV/AIDS activists were successful because they refused to accept that the system was unchangeable, and instead took the time to figure out what it should be and how it should work.
In case you didn't click on that Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change link, please do so. Perhaps there really is a roadmap after all.
Monday, July 4, 2011
Friday, July 1, 2011
Wednesday, June 29, 2011
Tuesday, June 21, 2011
Thursday, June 16, 2011
Wednesday, June 15, 2011
Remember June 19, 2003? It was Lou Gehrig's 100th birthday. We passed out baseball cards and gathered donations for nice commemorative pins. We started to realize that there are a lot of young baseball fans who don't realize who Lou was. We raised awareness the way we always raised awareness -- with modest and diligent and sporadic efforts at small events.
Monday, June 13, 2011
Saturday, June 11, 2011
Tuesday, June 7, 2011
Earlier this year, we requested that you contact your Members of Congress to urge them not to eliminate the ALS Research Program at the Department of Defense. Thanks to your outreach, Congress provided $8 million for the program this year! You made a difference. But we need your help again.
The House Appropriations Committee is scheduled to vote on the FY 2012 Department of Defense Appropriations Act on Tuesday, June 14 and we have learned that an amendment may be offered that would eliminate the ALSRP next year. We cannot let this amendment pass. If it passes, at least $8 million that is so urgently needed for research no longer would be available. It would mean that research specifically designed to find a treatment would not take place.
Please contact your Representative TODAY! Tell them to save the ALSRP and work with the Appropriations Committee to make sure our government continues to support the fight to find a treatment and cure as soon as possible!
You can email your Representative directly from our website, here. Do it today. And tell your friends, family and everyone else you know to do the same. Your outreach made a difference earlier this year and we are confident that it can again -- but only if you take action today.
Friday, June 3, 2011
That "90 minutes" is based on U.S. statistics only. Around 6000 people in the U.S. are diagnosed with ALS every year and a like number die from ALS. That's around 16 U.S. diagnoses and deaths per day, or one every 90 minutes. Great. But it's U.S. only!
ALS is a global problem.
The United States has around 4.5% of the world's population according to the U.S. Census Bureau.
So... assuming that the incidence of ALS is similar globally, let's try some arithmetic...
6000 / .045 = 133,333 new cases and funerals annually worldwide. Whoa.
133,333 / 365 = 365 new cases and funerals daily worldwide. Wow.
365 / 24 = 15 new cases and funerals per hour worldwide. Holy moley.
60 / 15 means that every 4 minutes someone is diagnosed with ALS. Every 4 minutes someone else dies from ALS. Yikes.
So let's get it right. Either "Every 90 minutes someone in the U.S. is diagnosed with ALS. Every 90 minutes someone else in the U.S. dies from ALS," or "Every 4 minutes someone is diagnosed with ALS. Every 4 minutes someone else dies from ALS."
Tick, tick, tick.
p.s. If my arithmetic is off, I'm all ears.
Thursday, June 2, 2011
Today is the 70th anniversary of Lou's death.
It didn't take long for a man to go from baseball mega-superstar to the grave. This disease persists. The outcome today is much the same that Lou Gehrig experienced.
Perhaps our tagline should be, "ALS -- I'll bet you thought someone had cured it by now."
In the time since 1941 think of the advances in science and medicine and life. Polio and smallpox were conquered. Cancers are often treatable. MS patients have a long life expectancy. We have tiny cellphones and make long distance calls at will. We have an internet. We have dishwashers and wonderful television pictures and trash bags. Why have we not figured out ALS?
Every healthy person needs to squirm a little. Nobody is immune.
Wednesday, June 1, 2011
If you saw the 60 Minutes piece on the 21st Century Snake Oil , then you saw Steve Watters. He was an ALS patient who went undercover with Scott Pelley to expose the con man with a bogus stem cell cure for a price. Steve was always a thoughtful contributor on ALS message boards, and he turned out to be a huge contributor to the awareness of ALS in his role on that 60 Minutes segment.
Steve Watters has died.
Another nice person. Another achiever. Another contributor. Another funeral.
Friday, May 27, 2011
Last week alsadvocacy was in seminars with 20 people. Wearing a www.stealingpieces.org shirt to breakfast one morning was a conversation starter. A couple said that they had known General Tom Mikolajcik, a hero in the fight against ALS who enabled the service-related benefits for veterans stricken with ALS.
Later the next day prayers were requested for a friend of a meeting leader who had just received a serious diagnosis. It was ALS. Unbelievable.
That caused even more conversations in the group about the disease. One gentleman shared that he had lost a college roommate to ALS. Another talked of his uncle who died from it.
Twenty people. So many ALS connections. This disease is not as rare as people like to think. It strikes and kills quickly. It then moves on to strike and kill more people. We must keep the conversations and connections alive so that the world might realize that it is a problem urgently in need of a solution. We must speak up for all of those who have been silenced by ALS.
I had the distinct pleasure this afternoon of receiving a phone call from Eddie Martiny, General Manager, and Marc Sherman, FM Operations Manager, of the Clear Channel stations in Houston. They were calling at the request of Mr. John Hogan, President of Clear Channel Radio, who received my letter asking for a public apology. They were interested, compassionate and want to help us with an awareness campaign through their sister stations. They also gave me permission to share with you the words of the public apology that was made on KKRW station on Tuesday:
“KKRW and Walton & Johnson would like to apologize for insensitive remarks about Stephen Hawking’s physical condition that have caused distress to people with disabilities, including those with ALS – which Professor Hawking suffers from – and their families. We recognize that there are many people in Houston who suffer from serious, debilitating illnesses and no offense to them was intended.”
They are working on producing public service announcements, and will run them on all of their stations during the next couple of weeks. I urge all of you to join me in thanking them for their concern and their response to the ALS community. I want to go on record with a huge thank you to the management of Clear Channel Communications, who recognizes the mistake that was made and are now doing everything they can to help us.
Clearly the use of online media to get Clear Channel's attention along with the refreshing ALSA leadership to meet the problem head-on made a difference.
This is ALS advocacy. This is ALS awareness. This is newsworthy. This is a huge step in a good direction.