ALS ONE – Sunday, August 21, 2022
ALS ONE included people living with ALS and caregivers in the ALS ONE Research Symposium. The organization demonstrates the spirit of the Morris ALS/MND Principles every time it provides in-person and remote access for those living with ALS so that they can be a part of the scientific discourse.
ALS Hope Foundation – Wednesday, June 22, 2022
The ALS Hope Foundation amplifies and serves the diverse group of people living with ALS. We appreciate their focus on doing the right things every day. Examples of this include providing an all-virtual Clinical Research Learning Institute (CRLI) in May, virtual participation in fundraising efforts, and supporting and sharing legislative actions in their monthly newsletters. They demonstrate the spirit of the Morris ALS/MND Principles every time they celebrate the successful efforts of others. The foundation routinely compliments and shares the excellent resources of other ALS nonprofits to address the critical gaps and needs in caring for loved ones living with ALS in their monthly newsletter.
- Morris ALS/MND Principles Accolade Certificate.
- Additional information on the aspects of the Principles the CDMRP ALSRP trial upheld.
CDMRP ALSRP – Tuesday, June 7, 2022
The CDMRP ALS Research Program (ALSRP) included people living with ALS (PLWALS) on all scientific advisory bodies related to ALS research. Since its inception, the CDMRP ALSRP has included people with lived experience of ALS (PLEx) as consumer reviewers of research grant awards. The scores and input of consumer reviewers carry equal weight as that of the scientific reviewers — a seat and voice at the award ranking table.
- Morris ALS/MND Principles Accolade Certificate.
- Additional information on the aspects of the Principles the CDMRP ALSRP trial upheld.
HEALEY Platform Trial – Monday, April 25, 2022
MGH Neurology’s HEALEY center for ALS introduced and implemented the first platform trial in this destructive disease including low placebo exposure and broad inclusion criteria. In addition, they incorporate the ideas of people with lived experience of ALS (PLEx) into their trial. The leaders of the platform trial enthusiastically keep consistent and transparent communication with people living with ALS (PLWALS) through weekly webinars.
- Morris ALS Principles Accolade Certificate.
- Additional information on the aspects of the Principles the HEALEY platform trial upheld.
Fight MND and MND Research Australia – Monday, April 18, 2022
Fight MND and MND Research Australia recently announced their 2022 Australia and New Zealand MND Research Symposium. On the registration form, we were pleased to see that they not only allowed people living with ALS/MND to register without a fee, they also used words that embraced us. They acknowledged the experience that people with ALS/MND can bring to a scientific conference – “Person with lived experience (PLEx) of MND”. We salute them for following not only the letter but also the complete spirit of the Morris ALS/MND Principles.
- Morris ALS Principles Accolade Certificate.
- Additional information on the aspects of the Principles Fight MND and MND Research Australia upheld.
Amylyx Pharmaceuticals – Wednesday, April 6, 2022
In 2022, Amylyx Pharmaceuticals partnered with people living with ALS (PLWALS) to create and implement the largest expanded access program (EAP) in ALS, which will give access to 250 PLWALS to investigational treatment AMX0035. In addition, Amylyx presented at the MDA Clinical and Scientific Conference to other companies on how to implement an EAP in partnership with people living with and impacted by ALS.