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Welcome to Connecting ALS. On today's episode we check in from the International Alliance of ALS/MND Associations' meeting.
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.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. This week, more than 200 leaders in the fight against ALS from all over the world are coming together to share updates in the fight during the International Alliance of ALS/MND Association's annual meeting and the Ally Professionals Forum. For the first time since 2019 and the COVID pandemic, many of them will be on the ground in San Diego.
Connecting ALS will be there all week, connecting with you every day to share some of the updates we are hearing during the meetings. In addition, the International Alliance will be sharing interviews with speakers and attendees on their social channels. So please make sure that you're following them on Twitter at ALS MND Alliance and on Facebook, the INTL Alliance, and we can share links to both of those channels in the show notes. Kicking things off today is Calaneet Balas, President and CEO of the AlS Association, the host of this year's event. Calaneet also serves as Chair of the International Alliance of ALS MND Associations. Calaneet, thanks so much for being with us on Connecting ALS today.
Calaneet Balas:
Thanks for having me back. It's a lot of fun to join you today.
Jeremy Holden:
Yeah. Well, we're looking forward to a week's worth of content tied into the International Alliance of ALS MND Association's meetings, and the Allied Professional Forum. You have the responsibility of kicking things off today. What's your message to the community?
Calaneet Balas:
I do have the honor. I call it the honor and the privilege, not only to kick things off, but really I think I sit in a very unique position, looking through a variety of lenses. My message today is a message of hope, really recognizing that we have brought together so many people from literally around the globe to sit, not only in a room together and have robust, deep dialogue about the future, but we've been doing this really in earnest over the last three years.
When I look back at where we were pre-pandemic 2019 and the International Alliance had just launched its previous strategic plan, and now I look at where we are, I wouldn't say post-pandemic, but maybe a little bit more through it, and we reflected back on the strategic plan for the Alliance over the summer, we realized just how much our community did and what we got done together over the past few years. It was remarkable. I mean, we went way past the goal line of the things that we outlined for ourselves. So now my message is, reach for the sky because we can actually get a lot done when we lean in together, and that gives hope for the entire community.
Jeremy Holden:
Yeah, and really looking forward to sharing a lot of those messages that we'll be hearing over the next couple days, not just here on Connecting ALS, but through some social channels in partnership with the Alliance. You mentioned Australia 2019, the last time everyone was able to get together in person. I know one of the big themes this week is going to be about community. What does it mean to be able to come together in person again?
Calaneet Balas:
Yeah, it's amazing. When I reflect back to 2019 in Australia, it feels like 10 years ago.
Jeremy Holden:
Right.
Calaneet Balas:
So much has happened between then and now, and the idea that we can not just exchange ideas, and plans, and conversation, but really sit and bridge our community, and break bread together, and just remember who each person is, and what they're representing from their countries, and what the needs are is just beyond all things I ever wanted to do. I don't think any of us really understood how much we needed each other three dimensionally before this pandemic. One of my theories over, especially the last year, is if the pandemic had lasted maybe six to 12 months, I'm not sure we would've had the same reaction, the same longing. But recognizing that it lasted, and it has been lasting over two years, going into three years, depending on where you are in the globe, it really shows just how much we truly need each other.
I think for our community in particular, where so many people already feel so isolated with this disease, and then to be isolated on top of that, for those who maybe haven't experienced that kind of isolation, gave us a sense of empathy that we never really understood before. So to be able to be together, I think we will see a lot of joy this week. I expect to see a lot of tears of joy, hugs, smiles, laughter, and that's worth everything.
Jeremy Holden:
Certainly, folks who aren't able to make it to San Diego, there is a virtual component.
Calaneet Balas:
Yeah.
Jeremy Holden:
I think another big takeaway from this three years on of the pandemic is we've figured out a way to expand the playing field and get more people involved, even if they can't get there on the ground yet. Definitely looking forward to being together in person and look, capping a big year for the community. We've talked about it a bit on this program, the fight for approval of AMX0035 now being marketed in the United States under the title, Relyvrio. As we look ahead, I don't want to stop the celebration on that. But just looking ahead, what gives you hope, reflecting on the past year and the fights to come that we continue to move in the right direction, and that there's good things on the horizon?
Calaneet Balas:
Yeah. Well, I do think, first, let's stop and celebrate for a moment.
Jeremy Holden:
Right, yes.
Calaneet Balas:
That was a lot of work from a lot of people. That's where tenacity pays off. You don't step off that gas pedal and no one could have done it alone. Just not possible. Not myself, not the ALS Association, no one. We needed everybody, and that was pretty remarkable. But when you talk about the future, I think that that is what gives me hope. This community came together, decided that science mattered, and decided that so does fortitude, and really leaning in towards our regulatory partners and saying, "Look, we need to move this forward." I mean, the fact is we all know we don't have many therapies on the market, and if there's something promising and safe, then we need to really lean into it.
I know there will continue to be challenges. We're going to have to really focus on the challenge of access. Now something gets approved. I already know. I already know people that aren't getting it. I already know people that are being denied access to it. I've already seen some of the claims from some of our insurance providers, so that's the next battle, and we knew that was coming. We've been working on that as well. When we look into some of the other drugs in the pipeline, I mean, I'm excited. I'm excited to see some of these phase three trials read out. I have great hope, and I think Relyvrio gives me, I guess, just a little bit more gas in the engine to keep going to say, "Yep, the next one might be just around the corner."
So I think we're very poised as a community to continue moving forward. When you look at it on a global scale, that's really powerful, and that's what I'm starting to see from the International Alliance, which is my colleagues in other countries, we have each other's phone on speed dial. What's happening in Canada? What's happening in Europe? What's happening in all these different countries? What's going on in Australia? So we're really strategizing, not just domestically, but also seeing if we can use influence from across the boundaries of maybe the pond or another ocean. So I'm excited that we're really getting that tight-knit community together to push things along.
Jeremy Holden:
Across all the ponds, big and small.
Calaneet Balas:
Right.
Jeremy Holden:
Yeah, definitely looking forward to see that coming together that we see happening out in San Diego and around the world. Calaneet, thanks so much for your time today.
Calaneet Balas:
Oh, my pleasure. I'm really excited to have everyone here. I mean, it's San Diego, so that's not bad. I'm, like you said, I'm so excited about the people that'll be joining us virtually. This is a new opportunity, and so we have, I don't even know, 50, 60, 80 people or so that will be dialing in just to the International Alliance, not along the APF. So should be a really great week. Thanks, Jeremy.
Jeremy Holden:
I want to thank my guests this week, Calaneet Balas. If you liked this episode, share it with a friend, and while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Racecar. Post-production by Alex Brower. Production management by Gabriela Montequin. 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 - Coming Together as a Global Com... (Completed 12/20/22)
Transcript by Rev.com
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