Welcome to Connecting ALS. Today we come to you with an update on the global fight against ALS.
This episode is brought to you by The ALS Association in partnership with CitizenRacecar.
What is Connecting ALS?
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
This transcript was exported on Dec 20, 2022 - view latest version here.
Hello everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden. All week, we've been connecting you with some of the leading voices presenting the latest in the fight against ALS during the 2022 International Alliance of ALS/MND Association's annual meeting and the Allied Professionals Forum. If for some reason you missed any of our past conversations from this week, you can find those discussions at connectingals.org or wherever you listen to podcasts. Today we are closing out our week of special programming by getting a final status update on the global fight as it is today, and looking ahead to Basel Switzerland site of the 2023 meetings. For that, we turned to Cathy Cummings, executive director of the International Alliance of ALS/MND Associations. Well, Cathy, thanks so much for being with us today on Connecting ALS.
Thanks very much, Jeremy. Happy to be here.
Yeah, it's an important time of year as we kind of gather together as an international community fighting a ALS and MND and kind of get a sense of where we are and where we're going. So let's start with where we are. What gives you hope today that we're on the right track and moving in the right direction in the fight against ALS and MND?
Well, that's a big question and there is so much to be hopeful for right now. First of all, I'm very happy and grateful to be back together in person after the pandemic. It's the first time that we've been able to gather in person since December 2019, and one of the things about this community is that we do more together. And so the opportunity to be together in person is very important to being able to move everything forward, whether it's research or care or any part of what we deal with in the ALS community. And the things that really give me hope right now are first of all, the pipeline of treatments that are in the works and hopefully being approved down the road and hopefully will get positive results from the many, many clinical trials that are going on right now. So from the treatment side, that gives me hope.
The other thing that really gives me hope at the international level is how well the community has come together through virtual meetings over the last three years to really coalesce and use our resources in a coordinated way to help solve some of the bigger issues where we have access issues around things like technology and treatment availability and improving regulatory pathways. The community has really, as I said, come together at a global level and is having the important conversations to increase access everywhere in the world, especially in underrepresented communities.
Such a big theme this week is that that notion of community and coming together. Talking about where we are, let's look ahead to where we're going over the course of the next 12 months. It's December. It's a time to look back and look ahead. What do you see as some of the big initiatives or challenges to face and tackle over the coming year?
Some of the initiatives that we're going to tackle over the coming year were really born out of some of the things that we worked on this year, so I'll mention three of them. One is looking at outcome measures and trying to harmonize those around the world for clinical trials. So bringing together our whole stakeholder community, whether it's industry or people living with ALS and our member associations, to talk about what are the outcome measures we're using right now in clinical trials? How can they be improved to get to efficacy in a better way? What outcome measures are being developed and how can they be embedded as secondary endpoints or exploratory endpoints so that we have better information that we can give regulators for approval of treatments that are in the pipeline. So that's a big conversation that's happening, and we, over the next year will be bringing together a consortium of stakeholders to continue that conversation at a global level so that we have, as I say, a harmonized approach across the globe so that people in Europe are working the same way as North America, as Africa and South America and so on.
That's one particular initiative for the future that I'm pretty excited about. The second one is something that derives from our Innovation and Technology Advisory Council. They're really putting a focus on voice preservation and making that available around the world. Voice is such an important part of a person's identity and being able to communicate and connect with your loved ones and with any part of your community and voice banking technology or voice preservation systems are not available everywhere in the world. They're being developed in the UK and in North America and in India and being developed in silos. So we at the global level want to really focus on voice preservation to make something available everywhere that is embedded into technology that everyone has, whether it's their cell phone or their laptop or whatever it is. We just really want to make it ubiquitous around the world so that everyone living with ALS has access to it no matter where they are, what their socioeconomic status is, or what language they speak. And then, sorry, I just have one more. I did say I was going to talk about three.
And the third one that I'm excited about for next year is our continued work on genetics. We did a lot of work this year on gene discovery, on natural histories and on clinical management for genetics, and we had 14 projects that emerged from that. Obviously, we don't have the resources to deal with all 14, but we have just recently prioritized them and we're going to try and take those forward. And one of the principles that we're going to use in the genetics work that we are working on, I already referenced a little bit earlier, which is what we want to do in the genetic space, is make sure we're including underrepresented communities and be deliberately inclusive of parts of the world that haven't been studied as well as other parts of the world.
So we think we'll get to a better understanding of the disease, which is lacking right now if we include the entire globe in the analysis right from the beginning. So that's one of the pushes that we're going to really focus on in 2023.
Very inspiring to think about breaking down silos and elevating this notion of inclusivity and equality in terms of care and access to some of the resources that are available. And it strikes me that you talking about the need for regulatory flexibility and regulatory expediency in terms of approving access to therapies really speaks to how vibrant and robust that drug development pipeline is, which is kind of an exciting place to be for the community. We're bringing this conversation to listeners at the wrap up of a great week in San Diego. Looking ahead to next year, Basel, Switzerland. What do you hope the message is 12 months from now?
I hope the message is that we have more approved treatments 12 months from now, that we have better access to voice preservation, voice banking, and that we have moved the needle forward on global research to be more inclusive.
Truly inspiring, Cathy, and it's been great talking to you as always, and thanks for all the work that you do for the community, and I look forward to talking to you again soon.
Thanks, Jeremy. Take care.
I want to thank my guest for today, Cathy Cummings. If you liked this episode, share it with a friend and while you're at it, great interview Connecting ALS, wherever you listen to podcasts. It is a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar, post-production by Alex Brower, production management by Gabriel LaMont-Keen, supervised by David Hoffman. That's going to do it for today. Thanks for tuning in. We'll connect with you again soon.
Connecting ALS - A Status Update on the Global F... (Completed 12/20/22)
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