ALS Awareness Month. Beyond the Ice Bucket Challenge. 

May is the first ALS Awareness Month since the Ice Bucket Challenge. That silly, organic, viral campaign did more for ALS awareness than years of marketing by any organization could have ever done. Millions of people created videos last summer.  Millions of people talked about ALS and looked up what it is. Over $220 million was donated to ALS charities worldwide. This money didn’t miraculously appear though. Hundreds of thousands of people chose to donate. It was not Internet “slacktivism”.  It was Internet activism at its best: People became aware of an issue and tried to make a difference. My hope is that some of these people will continue to actively support the ALS community. Every 90 minutes someone in the US is still being diagnosed with ALS and someone else is passing away from the disease. With continued, concerted effort, we have the power to change that.

My family did not have the luxury of forgetting about ALS once the videos stopped popping up on Facebook last year. I was diagnosed with ALS in 2013. Shortly after my son James’s first birthday and before his sister Mary Adair’s third birthday, I was told what I thought was a minor hand ailment was a neurodegenerative disease that would progressively rob me of my ability to write, to walk, to speak, and to eventually breathe.  No cure, no treatment, and an average life expectancy of 3 to 5 years. The prognosis is essentially the same today, a year after the Ice Bucket Challenge, as it was for Lou Gehrig when he was diagnosed 75 years ago.

The Ice Bucket Challenge hasn’t slowed my progression. My hands and arms are very weak now. I haven’t buttoned a pair of pants in over a year. Showering and drying off sap all of my energy. Walking is getting more difficult. Yet over the past two years, I have been very lucky that my progression has not been faster. I have seen friends get diagnosed and pass away in the time I have had ALS. Friends, who within months of their diagnosis, can no longer speak or can no longer walk. Since I’ve been diagnosed, James has learned to walk, talk, and get himself dressed (mostly).  He has become a big three-year-old, taking on the world in his rain boots because those are the shoes that are the easiest for him to get on and off by himself. He beams with pride when he actually puts them on the right feet. Mary Adair is now playing soccer, taking ballet lessons, has learned to read, and can fill out the numbers on the check for me when we go out to eat. In many ways, they are still growing up faster than I am progressing.  But when I start to do the math, it just doesn’t add up. For all his development, James is still only three. So in two more years Mary Adair tells me he will be five. I don’t see them carrying me to the beach or driving themselves to school at ages 5 and 6. It doesn’t get easier from here. One summer is not enough to change our future. It will take continued action to change the course of this disease for families like mine.

Already I see what it means for my wife. Because my arms are weak and getting around is enough of a challenge on its own, I can’t help with much around the house.  She is left to do the work.  My wife has excelled at everything she has ever done. This month we will attend her class reunions at the University of Virginia and at Harvard Business School. Going forward, though, the house we live in, the city we live in, the job she takes, will all be dictated by her choice to push our family forward the best she can in the face of this disease. I am in awe of her strength and am humbled by her commitment to our family. I have the greatest partner to live with and to fight this disease with.  But make no mistake, she has ALS just as much as I do.

People who did the ALS Ice Bucket Challenge need to remember that they were helping families. They were trying to change our future. Ice Bucket funds have improved the research landscape.  I am taking part in a Precision Medicine study at the ALS Therapy Development Institute (als.net) that was made possible by a surge in funding last summer. The ALS Association received the lion’s share of donations and has been able to triple their annual research spending, as well as increasing funding for patient services and building relationships with other ALS organization that share a common goal. They must continue to put these funds to work investing with the urgency this situation requires.
The success of the Ice Bucket Challenge, which did not come out of any one organization, but from patients themselves, has reiterated to individuals the kind of impact they can have, and has shown the community what it is capable of when people rally together. For example, Medicare’s arcane reimbursement policies for speech generating devices (SGDs) currently have a drastic impact on patients’ quality of life, restricting their access to technology that allows them to communicate with loved ones and stay connected to the outside world. However, Steve Gleason, one of the most visible and inspirational ALS patients, has been instrumental in getting these policies reversed. Along with the Center for Medicare Advocacy, he has led the community in advocacy efforts that caused the Centers for Medicare and Medicaid Services to rescind some of their most restrictive policies. In addition, the Steve Gleason Act of 2015 would permanently fix these problems and has already been passed by the Senate. Now we need the House to quickly pass the companion bill so that we can put this issue behind us. Please encourage your representative to sign on as a co-sponsor and quickly bring this bill to a vote. Patients are continuing to find their voices and engagement by the broader public is making a significant difference. 

Recently, a small pharmaceutical company tried to utilize an expedited approval mechanism within the FDA to speed patients’ access to their experimental treatment. Given the current lack of treatment options, over 700,000 people signed a patient-led petition urging the FDA to grant Accelerated Approval to the investigational treatment. Without the awareness generated by the Ice Bucket Challenge, I do not believe that would have been possible. While the FDA declined the request, patients and their families had their voices heard and are continuing to work with the FDA and pharmaceutical companies so that expedited pathways are utilized to bring treatments to patients as quickly as possible. HopeNowforALS.org sprung out of this campaign as the ALS community recognized that all agencies, foundations, associations, and researchers, must approach this disease with the urgency needed to truly change the status quo.

In accepting a Webby Award as one of the creators of the Ice Bucket Challenge, my friend Pat Quinn said “Every August until a cure”. Whether it is dumping ice on their heads again, through donations, or through other means, my hope is that the millions of people who gained a glimpse into this community through the Ice Bucket Challenge continue to be engaged. In the past year, we have seen how their generosity and advocacy efforts have impacted the ALS community. Small acts go a long way. Small donations add up. $220 million alone will not cure ALS, but continued efforts from people now aware of the disease will make a difference. Maybe it is time to graduate from ALS Awareness Month to ALS Action Month.

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The Case for Granting Accelerated Approval to GM604

This past week I went to Washington DC to speak at a rally urging the FDA to grant Accelerated Approval for GM604. I saw old friends, made new friends, connected with many families in the ALS community, and met with members of Congress.

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While we do not yet know how effective GM604 will end up being, Accelerated Approval was specifically designed to allow patients access to treatments, that have been shown to be safe, for serious conditions with limited therapeutic options.

Please note that Accelerated Approval does not come at the expense of good science. Data will continue to be collected and full approval will not be granted until results of a confirmatory trial prove efficacy. There are simple statistical techniques that can be used to control for placebo effects even in single-armed trials.

Here is the text of my speech in which I lay out why I believe Accelerated Approval should be granted:

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March 25, 2015

Hello, my name is Stephen Finger.  It is an incredible honor to speak here today in front of so many families involved in this fight. I grew up across the river in Arlington, VA, but never anticipated coming to DC for this reason.

Two years ago I was diagnosed with ALS. Between my son James’s first birthday and his sister Mary Adair’s third, I was told, what I thought was a minor issue with my hands, was a disease that would rob me of my ability to play catch, to play tag, to walk, to speak, to eat, to breath.

My family’s lives where forever changed and if one thing was clear, it was that time was of the essence. And just as we recognized the need to live urgently; to hug today, to laugh today, to live today, to love today. We also recognized the need to act urgently, to act today. That is why we are here. Team Gleason says “Not quietly”. The ALS Association says “The time is now”. We are here telling the FDA that the status quo is not good enough and they need to do everything in their power speed the search for a cure. We are here urging our members in Congress to remind the FDA to work with the flexibility and urgency needed to fight this universally fatal disease.

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I have now been a part of this community long enough to see patients who were diagnosed with this disease after me lose their fight. Last year, I had the pleasure of meeting Trickett Wendler in the halls of Congress. A young mother with three kids, a wife, a friend, a relentless advocate, she was diagnosed in the summer of 2013 and passed away in less than 2 years. Always one to speak her mind, she has asked her friends to continue to fight. So we are all here on her behalf.  On Tony Conway’s behalf. On so many other great people’s behalf, who have been lost to this disease that we know can be solved.

We are not just here acting in their memory, we are here inspired by the way they fought this disease. Everything we do must be done with the recognition that every 90 minutes another mother, another father, another daughter, another son, another friend will be lost.

It is with that urgency that we are here today asking that the FDA grant GM604 Accelerated Approval. Let’s not force it to go more of the traditional trials that will take years to complete. Based on the results of the Phase I and II trials, let’s make it available immediately to patients who desperately need it, while we gather confirmatory data required of full approval. We are not asking today to rewrite any laws. We are not asking for a special exception. We are asking that the FDA uses the tools at their disposal to make this treatment available to as many people as possible in the shortest amount of time.

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Accelerated Approval is not a new program. It has been around for over 20 years, specifically designed for situations like this. Congress has provided them with the ability to act with the urgency this situation merits. The 2012 Food and Drug Administration Safety and Innovation Act, with near unanimous support in both the House and Senate, I quote: reiterated the “Agency’s longstanding commitment to regulatory flexibility regarding the evidence required to support product approval for the treatment of serious or life-threatening diseases with limited therapeutic options”.

That is us! Here is their chance to live up to their own directives. Today! We are simply asking that they use the tools at their disposal to act with the urgency Congress told them to act with. The urgency deserved by the families in this fight.   No ALS treatment has been granted Accelerated Approval before, so here is an opportunity to show a new way forward. The status quo is not good enough.

In GM604, we have a drug meets the FDA’s own criteria for Accelerated Approval. Its safety has been demonstrated according to traditional standards. Over 50 patients have received GM604 with no adverse events, consistent with the preclinical work.  Surrogate endpoints for efficacy have been reached. Even in a small trial, GM604 had a significant effect on Forced Vital Capacity, which we know is a predictor of survival. Because ALS is a complex disease and progressions vary, meeting traditional standards of efficacy will require additional large and lengthy trials. Well we don’t have time for that and Accelerated Approval was specially designed to address this. While we wait for confirmatory data, let’s give current patients a fighting chance.  That is the directive Congress has given.

Now sure after Phase I and Phase II trials there are still risks, but there will still be risks after Phase III and more importantly, we all know what the risk of inaction is. Accelerated Approval does not mean we enter the wild, wild west. Data will still be collected and approval could still be revoked if confirmatory trials do not go our way. But given the safety data, given the suggestion of efficacy, given the prognosis of the disease, given the urgency of the situation, isn’t that a risk we are willing to take?  Isn’t that a risk the FDA is supposed to take? Given the evidence from the competed trials, doesn’t that make more sense than telling current patients to sit tight for two years until another trial can be completed?  We won’t sit here quietly. Too many people have already been lost. Too many people have shown us the importance of acting today.

The FDA has recognized that different conditions require different acceptance of risk. They have granted Accelerated Approval status to cancer drugs, to HIV treatments. They have this tool at their disposal specifically for situations like this.  Just because ALS is not communicable does not mean that we can be complacent.

So we are telling the FDA to act urgently, to act today, to act for the families in this fight, to grant Accelerated Approval to GM604.

Thank you.

If you have not done so, please sign the White House petition requesting that the President urge the FDA to grant Accelerated Approval to GM604.

https://petitions.whitehouse.gov//petition/request-fda-grant-accelerated-approval-potentially-life-saving-treatments-als-now-starting-gm604

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Genervon’s GM6

Over the last couple of weeks, you may have seen information regarding Genervon’s GM6 therapy. GM6 is a naturally occurring peptide that regulates multiple genes and has shown no health risks.  Results of the latest trial suggest that it is effective at hitting its targets and has a statistically significant impact on patients’ progressions. Because of this, Genervon is seeking conditional approval from the FDA so they can make the treatment broadly available to patients while they continue to collect data to ensure that the drug is safe and effective (http://friends4eric.blogspot.com/2015/01/condition-green.html). Over 75,000 members of the ALS community have signed a petition encouraging the FDA to grant the approval (https://www.change.org/p/food-and-drug-administration-accelerated-fda-approval-of-genervon-s-gm6-for-use-in-als).

If I went into a complicated surgery, I could tell the doctors to go to extraordinary measures to save my legs or my voice. It would be a tragedy if they couldn’t accomplish that goal. If I woke up without the ability to stand or to walk or to speak, the doctors would feel that they had failed. Yet supporting the status quo and suggesting Genervon should do a Phase 2b trial, and then go from there, is essentially resigning me to the same fate, if not much worse. There is nothing in the immediate research pipeline with the capability of truly regenerating nerve cells. Even the stem cell trials work by creating a healthier environment for the remaining motor neurons. So slowing or stopping the disease is the immediate goal. And the immediacy and the urgency is real. Without an effective treatment I know where I, and many of my friends, are heading. Life expectancy is 2-5 years after diagnosis.

GM6 may not eventually prove to be effective for everyone.  However, two safety trials have found no significant safety risks. The pathways that it affects are not inherently dangerous. The company laid out pre-specified biomarkers and clinical primary and secondary outcome measures. This 12-week study actually had one of the most extensive biomarker plans of any trial I am aware of. So the researchers could not just monitor symptoms, but could measure what was occurring around the motor neurons.  In the trial GM6 had a statistically significant impact on a number of these outcomes. The results were consistent with what they said the treatment should do and were consistent with its performance in animal models.

I have a PhD in an empirical field. Over the past 10 years or so I have worked with data for a living. I understand the limitations of a 12 person trial, but also understand how unlikely it would be to get these results at random. Something positive is going on and we have lots of evidence that the treatment is safe.  This is a perfect candidate for accelerated conditional approval. This type of approval would require full data collection and surveillance going forward and final approval would be based on the data. If serious adverse events occurred or the data didn’t hold, approval could be quickly pulled. Inaction in all likelihood would be much more dangerous than action. “Do no harm” takes on a different meaning in this community. The pharmaceutical company wants to move forward and 75,000 members of the community are ready to act.

Suggesting we wait two years for the results of another trial is suggesting I tell the doctors I don’t want them to go to extraordinary measures. It is suggesting I should resign myself to what this disease will do to me over the near-term. And when you have ALS two years isn’t the near-term, it is a lifetime. How many of us won’t survive the next two years?

Yes, the standard protocol would be for another small-scale trial, but two years ago at a hearing with the ALS patients, the FDA said they recognized the urgent need for an effective treatment and would be flexible in working with the ALS community.  The FDA was flexible in addressing the Ebola outbreak last year, and because of the heroic actions of doctors and governments, less than 10,000 people died from the disease. Without any changes, roughly 75,000 to 100,000 people will die of ALS worldwide this year. Let’s let someone try to be a hero. Please urge the FDA to grant GM6 accelerated approval.

https://www.change.org/p/food-and-drug-administration-accelerated-fda-approval-of-genervon-s-gm6-for-use-in-als

Logistics

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It is now almost 2 years since I was diagnosed. All in all, my progression continues to be relatively slow. I am almost embarrassed to talk about many of my symptoms given what some of my friends are going through. I can still drive, get dressed, and feed myself. I can still do most things I need to do for myself in my day to day life. However, each of these things is getting more and more difficult. They have moved from being harder than they should be, to hard. Showering and drying off and getting dressed is a tiring proposition, so I don’t do it that often. Just ask my wife. At this point we can see that I won’t be able to do some of these for too much longer. Driving the kids to school, taking them to the zoo on my own, this may be the year I have to give these things up. Not being able to drive is obviously scary because of what it means to my freedom and the time I get alone with the kids, but it’s more than that. It also takes away one of the ways I can still contribute to keeping the trains moving on time for our family.

For example, we have our house on the market right now. It’s not the easiest thing to keep the house in “showing” condition with crazies running around with toys galore. So while we typically keep the house in pretty good shape, it’s a scramble when someone calls and wants to see it. The most efficient way to clean up is for me to take the kids and get out of Dodge. Then Cara’s left to actually get things done. This has been our strategy for lots of things around the house. I disappear with the kids, and she works. Obviously, this isn’t an equitable division of labor, but it has become the unfair default. When I can no longer drive, we will have to change the dynamics once again.

So in many ways, this year is going to be about logistics. What do we have to do to keep our heads above water? Steve Gleason is famous for saying that given where medicine is right now for ALS, “Technology is the cure”. I can see that day coming, but for us right now, logistics is the cure. Figuring out the hired help we need, how to get it consistently, and how to make sure everything doesn’t just fall on Cara. How do we make our daily lives manageable enough so that we can focus on other things?

If the kids are fed, laundry is done, and everyone gets a bath at least once a week, then we are winning. Then days are again about doing puzzles and reading stories and playing in the yard and going to ballet and getting the kids down and having a moment together of peace and quiet on the couch. Then physical limitations are just annoyances. These aren’t insurmountable tasks, but ones that need to get done.

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Once we accomplish them, then I know we will spend another year making incredible memories.  Like the afternoon in the fall when we had our family pictures taken and the kids somehow acted perfectly. Afterwards we noticed a brewpub at the edge of a pond in the same complex. So we sat on the dock in the sun, the kids feeding the blue gills and turtles and Cara and I enjoying a beer, laughing, waiting for one of the kids to fall in, and absolutely amazed when neither did. Memories like these:

Once we figure out the logistics, my third year with this disease will be remembered as the one in which we find a cure!

TDI Weekend – November 2014

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Cara and I spent this past weekend up in Boston visiting ALS Therapy Development Institute. ALS TDI is a nonprofit biotech solely focused on finding a treatment for ALS. It was started by a patient and his family and continues to be closely aligned with patients, having a patient as the chairman, and family members of patients making up the majority of the board seats. The funds we raised this summer from our event in New York went to TDI and Cara and I continue to strongly believe in their mission and team.

On Thursday, TDI hosted a Leadership Summit. They had presentations from a number of scientists and a panel focused more on the business side of drug development. Then Saturday night was their annual gala. And on Monday, I got to tour the lab and gave my samples for their Precision Medicine Program.

This is a program that got accelerated by an influx of funds this summer. They originally planned to collect data from 25 patients, but now are enrolling hundreds. On Monday alone, they had six patients in. They took blood and a skin samples from me to be used to map my genome and to grow stem cells. Then they will test 50,000 drugs against each of our stem cells to try to see if they can find subgroups of responders. One of the most difficult things about this disease is its heterogeneity. Patients differ in their age at onset, the location of their onset, their progression, etc… So it seems crazy to think that some drug will affect everyone the same, but that’s how most traditional trials are set up. This program will be able to move somewhat in reverse, first identify who responds and then look for commonalities in patient’s backgrounds or genetics. I also get to wear accelerometers that will track my movements so they can look back over time and see what influences progression. (Right now the devices are kind of distracting as I keep waiting for them to start flashing to let me know my table is ready.) TDI is using technology that has only recently become feasible on a large scale and are quickly deploying funds to try to find answers as fast as possible.

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I think the two most amazing things from the weekend were meeting the patients that were there and the team from TDI. I got the chance to speak with a number of scientists and operations people throughout the weekend. You cannot help but come away incredibly impressed by their passion for what they were doing. Not just that they thought the science was interesting, but they were truly devoted and passionate to finding a treatment. They were emotional when speaking with patients, recognizing they weren’t trying to solve some puzzle, but they were trying to save our lives. Many of the employees that TDI came to the organization because they had some connection to ALS, but the others are hooked as well. They recognize how far this science has come, but more importantly realize it has to be pushed further to truly make an impact. One moment that stood out to me was towards the end of the summit Dr. Perrin, the CEO, said, “I am not going anywhere. I’m staying here until this is done.” That was sense you got from each individual. They haven’t just bought in to the mission of the organization, but they see it as their own personal mission to end this disease.

I was one of six people honored with their annual leadership awards at the summit. You had Anthony Carbajal, who always wears his heart on his sleeve, perfectly cry through his speech (https://www.youtube.com/watch?v=zvivmqeIxfQ). Hope and Steve Dezember perfectly danced through theirs (https://www.youtube.com/watch?v=mJdNapQgJ5A). Pat Quinn was partying at a buddy’s wedding, but sent a video and you could see his determination to make a difference (https://www.youtube.com/watch?v=vxyDyRgc6fg). Then there was Deb Quinn, a patient who movingly spoke about her family being ravaged by familial ALS. More than 20 people in her family have died of ALS and now she has a son with the SOD1 gene causing her to proclaim, “I will never be silent about ALS.” Her speech is here, https://www.youtube.com/watch?v=nGJDoUP4KK4. It’s amazing.

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At the cocktail hour on Friday and at the gala we were able to meet other patients and family members. People who I talk to online. Families committed to pushing TDI forward. Advocates fighting to improve patients’ lives. People who of lost loved ones to this disease, still doing everything they can to change its course. (Sarah Coglianese describes meeting some of them here: http://www.speed4sarah.com/notes-on-a-party/ If you are not diligently reading her blog, you need to start. Now.)

As we were flying home, I was thinking about all of the great people we had met over the weekend. I was smiling thinking about having turned my Internet friends in to real friends. So many great people facing a similar future to ours with positivity and determination. Everyone had a spark. People who love life and won’t let this disease change that. People who I can’t wait to see again. But then it hit me. By next year’s gala, we will all look different. Some of us may lose our ability to walk, for others the ability to talk, for others the ability to breathe. Science is moving at an incredible pace, but so is the disease. The urgency is still there. Like Deb said, we can never be silent, we must continue to keep ALS in the spotlight, and to make sure organizations like TDI have the resources they need to move forward as fast as possible.

However, it is comforting to know we are in this with such great peers, families, advocates, and scientists, all working to end ALS.

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Renewed Hope, Renewed Urgency For ALS Organizations

People continue to dump ice water over their heads in the name of finding a cure for ALS. It is over a month since I saw the first videos start showing up on my Facebook feed. Since then it seems like most everyone in the world has done it, but still I see new posts each day. They continue to make me smile and they continue to give me hope that now we will have the resources to change the course of this disease. People now have a connection to ALS and ALS organizations have seen an unprecedented surge in funding. And it continues.

While buckets continue to be dumped and donations in quantity and in magnitude that we have rarely seen before continue to come in, we must also be focused on moving forward. I was encouraged last week when ALS TDI announced that the unanticipated $3 million in donations they received this month would allow them to fast-track two programs that had been in their pipeline. A drug trial that they thought would take two years for them to raise the necessary funds for, will now go forward. If it succeeds, that means patients get this treatment two years faster. That is almost an extra generation of ALS patients saved. If it fails, we learn WHY two years faster and can proceed accordingly.

Organizations like Project A.L.S. and the Packard Center have also stressed that additional funds will be put to use immediately. These funds will change what they can do and how fast they can do it.

The scale of the donations that the ALS Association has received far exceeds what any of the other organizations have generated. While ALS TDI can quickly put a 30% increase in their yearly budget to work, is unrealistic and imprudent for the ALS Association to hastily make a decision on what to do with $100 million. They also must make sure adequate funds are devoted to patient care and improving the quality of life of all pALS. However, that does not mean we can’t do anything today. That does not mean we can proceed in a business as usual fashion. We should not wait until October to act.

For example, on August 11 the ALS Association announced 21 new research grants totaling $3.5 million. In the call for proposals, the maximum award was listed as $240,000. That means, on average, these grants covered roughly 60% of the maximum request. Some of the proposals may not have requested the maximum, but I think it is clear that many of these grants were not funded at the requested amounts due to the size of the budget. Increasing the scale of these awards would immediately change the pace of these research projects. In addition, limited funds likely restricted the number of grants awarded. There likely were additional worthy projects that went unfunded. With the new resources at their disposal, these projects could move forward quickly through additional grants. Though the ALS Association should take the time to think about the best uses of this unprecedented surge in donations, they also should make a point to fully fund promising research as soon as possible.

Similarly, we have been told the FDA is speeding up the trial process, but now institutional review boards are slowing us down. The Northeast ALS Consortium (NEALS) has been working to create a centralized system. Provide them with the resources they need to get it up and running. That will cut months or even years off each stage of clinical trials. Make sure we move this forward as fast as possible today. While the ALS Association makes a long-term plan, they should also be putting targeted resources into fully vetted, “shovel-ready” projects.

People have used the analogy of not wanting to end up like a lottery winner who four years later wondered where all the money went. For myself, my family, other families facing this disease today, and those families who will be cruelly introduced to the disease in the coming years, my biggest fear is we will be asking where all the time went. No matter what we do, we cannot get the time back.

If in four years’ time we have spent the ice bucket money and have not found a cure, there still will be armies of people combating the disease. There still will be families pounding the pavement to raise additional funds. There still will be new patients being told they have been stricken with a uniformly fatal disease with no cure, whose friends and families will generously devote their time and resources to the fight.

I understand that many funded clinical trials will fail. I understand that there will be research projects that lead to dead-ends. I am okay with mistakes or failures, but not with complacency or business as usual. I will continue to pester my friends and family for donations as long as I feel like their money is bringing us closer to a cure. However, it will be hard to continue to make requests if the largest organization is sitting on a war chest. For years we have spoken about the urgent need for new funds. We have repeated the Dr. Appel’s quote that, “ALS is not an incurable disease. It is an underfunded disease.” Well now that some of the necessary funding has come in, let’s respond with equal urgency in our actions.

ALS Ice Bucket Challenge

As many people have pointed out, dumping a bucket of ice on your head isn’t going to cure ALS and it doesn’t do anything directly for my family. But it still matters.

Most people in the ALS community believe that if more people were aware of the horrible nature of this disease, then much more resources would be devoted to finding a treatment or a cure. I personally knew nothing about ALS until I was going through the process of receiving my diagnosis. So anything that shines a light on what people currently living with the disease and their loved ones are going through is a positive.

Sure in some of the videos it isn’t clear whether or not people truly get it or just want to see themselves on Facebook. It is a vanity project for many. Lots of people who watch Justin Timerlake or Jimmy Fallon or Aaron Rodgers just laugh at the spectacle and move on. However, in the majority of the ones I have seen, people are thinking about ALS. ALS was the fourth most searched topic on Google this weekend. Maybe they just click on a link to see who Pat Quinn or Pete Frates is. Well, it only takes a second for the reality of ALS to hit you when you see Pete Frates. An expectant father and charismatic former college baseball star who now is losing all of his physical abilities. He lives in Boston close to some of the most preeminent ALS researchers in the world, but right now there is little they can do for him. When he was diagnosed he got the same prognosis that Lou Gerhig did 75 years ago. 2 to 5 year average life expectancy. No real treatments. No cure. He is left to fight on his own, with his family, and with anyone that will join him. He has inspired thousands of people to get involved. If pouring ice water on your head and making silly videos on Facebook brings more people into that fight, then we as a community win.

With something like this, you also see how many people are supporting other families facing this disease. You realize that the tent is growing. It is similar to the feeling I got when I went down to New Orleans. Everyone in that city is behind Steve Gleason. That means they are behind me as well. Seeing the outpouring of support for other people living with ALS through a something like the ice bucket challenge gives me hope that someone has my families’ back, that the ALS community will receive the resources it needs to find a treatment or a cure as quickly as possible. And it is all playing out. Awareness is leading to actions. Many ALS organizations, like ALS TDI (www.als.net) have reported tenfold increases in fund raising over the past couple of weeks.

So I completely agree with the skeptics, pouring a bucket of ice over your head will not cure ALS and does not help families living with the disease. But people learning about the horrors of the disease and the desperate need for treatments, people reaching out to support those of us affected, people choosing to generously donate ALS charities like www.als.net and www.teamgleason.org, this makes a difference. This gives hope to me and my family.