Accolades

We look forward to hearing from members of the community who would like to point out individuals and organizations whose actions are great examples of upholding the Morris ALS Principles. The team looks forward to verifying those nominations and contacting the accolade recipients with our thanks.  We will also post our gratitude on the website.

 

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.

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.

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.

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.

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.