Connecting ALS

This week Jeremy talks to Dr. Alison Bateman-House, a medical ethicist and member of NYU Langone’s Working Group on Compassionate Use and Preapproval Access, to uncover the work being done to expand the ethical allocation of drugs that are currently in development.

Learn more about the Working Group on Compassionate Use and Preapproval Access at https://med.nyu.edu/departments-institutes/population-health/divisions-sections-centers/medical-ethics/research/working-group-compassionate-use-preapproval-access/frequently-asked-questions

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy checks in with Dr. Neil Thakur, The ALS Association’s Chief Mission Officer, for an update on implementing the ACT for ALS and digs into the latest developments on reviews of AMX0035 by the FDA and ICER.

Learn more about ICER’s review of AMX0035 at https://www.als.org/icer

To hear more about the path to bringing AMX0035 to people with ALS, check out https://www.connectingals.org/episodes/fight-for-amx0035-approval-moves-forward-with-amylyx-nda-announcement

Sign up to become an advocate and join the fight to full fund ACT for ALS at https://als.quorum.us/register/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Dr. David Walk, professor of neurology at the University of Minnesota and editor of the Clinical Handbook of Neuromuscular Medicine, about primary lateral sclerosis and some of the similarities and key differentiators between PLS and ALS.

To learn more about the process of diagnosing ALS, go to https://www.als.org/understanding-als/symptoms-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Sarah Trott and talks to JoCarolyn Chambers, care services manager at The ALS Association, for insight on how to handle and talk about grief and loss.

For more advice from JoCarolyn on processing grief and loss go to https://www.als.org/blog/grief-loss-exploring-emotional-impacts-als

Learn more about Sarah at https://www.sarahtrottmedia.com/about

Check out Sarah’s previous appearance on Connecting ALS at https://www.connectingals.org/episodes/supporting-young-caregivers

If you are a caregiver and want to join Sarah’s caregiver community on Facebook, go to https://www.facebook.com/groups/144164414015354

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes Dr. Neil Thakur, chief mission officer at The ALS Association, and Sara van Geertruyden, executive director at the Partnership to Improve Patient Care, to discuss a cost-effectiveness review of AMX0035 by ICER and criticisms of the organization’s methodology that has been called discriminatory toward people with disabilities.

For more information on the ICER review process to go als.org/icer

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Corrie Libby, care services coordinator at The ALS Association MN/ND/SD Chapter, about making sure people with ALS have access to the best care available.

Learn more about The ALS Association’s network of multidisciplinary clinics at https://www.als.org/local-support/certified-centers-clinics

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy looks to the year ahead in ALS research with Dr. Kuldip Dave, Vice President of Research at The ALS Association, and digs into a drug rescue analysis project with Dr. Dave Ennist, CEO and Chief Science Officer at Origent Data Sciences.

Learn more about The ALS Association’s research program at https://www.als.org/research

To get involved in ALS research go to https://www.als.org/research/how-can-i-get-involved-research-if-i-am-ineligible-clinical

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, to look ahead to the year in advocacy and to dive deeper into the successful push to enact the ACT for ALS Act. We also reflect back on our conversation with Rep. Mike Quigley (D-Ill.) on the impact of ALS advocates.

Sign up to become an advocate at https://als.quorum.us/register/

Stay on top of The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy explores the work being done to expand access to high quality care with Dr. Neil Thakur, chief mission officer at The ALS Association, and Lori Banker-Horner, the Association’s director of clinical programs.

Learn more about The ALS Association’s clinical network at https://www.als.org/local-support/certified-centers-clinics

Read more about multidisciplinary care and get the latest on the clinical footprint at https://www.als.org/blog/extending-survival-people-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy puts a bow on the year that was and looks ahead to 2022 with ALS Association President and CEO Calaneet Balas.

Learn more about the impact the Association was able to have in 2021 at https://www.als.org/2021-year-end-report

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.