Highlights from Our January Listening Tour

In January, CEO and President Barb Newhouse hosted a Listening Tour with Association staff leaders, BOT Chairman Doug Butcher and Bill Thoet, former BOT Chairman and current Chairman of The Association’s Research Committee.

Here were some of the questions from the community and the responses from the Association:

Why is ALS not a mandatory recorded disease by the CDC?

Currently, the ALS is not a mandatory recorded disease. We are currently working with the CDC to explore if ALS can be reclassified as a mandatory recorded disease. For some diseases like cancer, there is a mandatory recording state by state and all of those data points are sent back to the CDC. The CDC recognizes that there is an under reporting of ALS cases in the United States. It is also a system issue. The CDC will have to develop a system on a local level through neurology offices and hospitals for information to be recorded and sent back to the CDC. Once we get the CDC to agree, then we have to implement the system. We will continue to update the community with this matter.

How are Ice Bucket dollars being spent for research?

As people may recall before the Ice Bucket Challenge, in fact the year the Challenge started our budget was $6.6 million dollars in research. In the last year, we allocated $19 million dollars to research. Many of those were funded by the extra money that was generated by the ALS Ice Bucket Challenge. We’ve had some considerable success with some of the things we invested with ALS Ice Bucket Challenge money. In fact, researchers identified a new gene, NEK1, and we have hopes of identifying gene combinations through a large scale genetic collection of data called Project MinE. Our team has done an incredible job in improving the research website in terms of actually diving in and seeing at a high level and at a detailed level what research has been funded, is being funded, along with detailed description of the projects and outcomes.

Ice Bucket spending: www.alsa.org/ibcspending

Research website link: www.als.org/research

What are you doing as far as TV programming and getting characters on TV shows with ALS?

We would love to get as much awareness of ALS into popular culture as possible. We are very hopeful with the Gleason movie because it is currently a contender for best documentary from the Academy Awards. We are hoping that it becomes a finalist because that would help the ALS community out tremendously. We have started talking with someone in Hollywood who has a connection to the disease and we are hopeful they will help navigate some of the issues with the studios about raising ALS awareness in popular culture.

What challenges has the ALS Registry had? How do we move forward with the Registry?

The challenges that the Registry has largely had is communicating what they are doing. I have had an opportunity over the last two months to meet with the CDC and they presented a really nice update on some of the things that have been happening. Some of the challenges going forward are going to be continuing to get people to sign up for the Registry and making it clear that the Registry is providing opportunities to get people into clinical trials. There are many companies and organizations that are accessing patient information from the Registry to reach out to patients directly and invite them into clinical trials. We will also need to make sure that the Registry continues to get funded. We do not want to see anything get cut in the new administration. That includes the Registry as well as research funding.

The MDA has recently started an initiative to make air travel more accessible. Does the ALS Association have similar initiatives or is partnering with MDA?

We are developing protocols to make it easier for those with ALS. We have a direct input on whether airports are helping to make traveling more accessible. We are trying to put ourselves in the middle of this discussion, so that we have impact. We are reaching out to the MDA to discuss how we can work together on this issue.

Please comment on what you are putting together that will be available for emergency rooms?

One of the things that we have heard clearly is folks having issues with emergency medical technicians (EMTs) and having to go to the emergency room (ER) with the fear that they do not know how to treat people with ALS. We developed a full packet of information that has gone through our medical directors for their advice. It includes things like key facts for the ER, EMTs and for hospital staff in general. It includes advance directives, medications, insurance information, important family members, friends and pets that need to be taken care of. It is in the design phase right now and we expect the packet to be distributed via the chapters and on our web portal. It is coming out in the next couple of weeks and we will alert the community once it is released.

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