"I love The Morris ALS/MND Principles "

2022-09-29 02:42:13

Skip to contentMorris ALS PrinciplesMenuCloseThe PrinciplesAboutHappeningsAccoladesCitationsNominate/ReportThe Morris ALS/MND PrinciplesDownload a fancy version of The Principles in a pdfDownload a printer-friendly version of The Principles in a pdfALS/MND, a devastating neurodegenerative disease discovered in the middle of the 19th century, has killed millions of people across the globe. Yet more than 150 years later, there are no cures, no effective treatments, no urgency. This is unacceptable.Today, we unite as leaders to end ALS/MND. We take ownership of our disease so that the road to cures is faster, equitable and more humane. We are not subjectsorvictims,andare only occasionallypatients, a term which implies passivity. We are a relentless community working alongside researchers, policy-makers and clinicians to identify and cure thisheterogeneous disease.We demand a seat at the tablebeforedecisions are made in drug trial design, research, healthcare policy or anything that affects our care.From this point forward,we will not tolerate siloes, disorganization or lack of urgency by any agencyor organizationthat serves us.There will beNothing About Us Without Us.We live on the ALS Clock.* ALS/MND is stunningly brutal and kills us quickly. Our political leaders must make ALS/MND research and therapy development a national priority. Our nation has rallied to confront HIV/AIDS, cancers, multiple sclerosis and now COVID-19. We demand that the United States leaders make a commitment to end ALS/MND.We will:Protectour intellectual, physical and financial dignity.Be global stewardsof our disease and respected partners in the science of treatments and cures.Act as trusted peerswith clinicians, researchers and policy-makers.Fightfor equity in decision-making.Lead to end ALS/MND.This impacts you!Healthcare professionalsCommunicate with us and about us as though we arelivingwith ALS/MND. We are partners with you in our own care.Encourage every Person Living with ALS /MND to consider clinical research by providing timely, comprehensive information about approved and investigational therapies. We are experts in our own disease and deserve to be informed.Provide accessible clinical and research options, including telehealth.Give options for genetic counseling and testing, even for those with no known family history of ALS/MND.Scientific community & ALS/MND research communityProvide virtual and in-person access to all ALS/MND conferences and scientific meetings for People Living with ALS/MND.Include People Living with ALS/MND on all clinical trial protocol teams, on advisory bodies to the National Institutes of Health, the Food & Drug Administration, Centers for Disease Control & Prevention.Build Expanded Access Programs (EAPs) into drug development plans. EAPs for other diseases were key routes to extend experimental therapies to those not eligible for trials and to learn more about the therapies and the disease. Sponsors must design trials that adhere to the Patient-Centric Trial Design (PaCTD)rating criteria.Share your data, designs, failures, and best practices. Your duplication of work is deadly.ALS/MND policy community, legislators & regulatorsPrioritize finding treatments and cures as if your loved one was living with ALS/MND. You must move as aggressively as the disease itself.Executereal pathways to access experimental treatments through EAPs or a national ALS/MND clinical trials network.Mandate a reliable census of People Living with ALS/MND with an annual report that uses modern technology and information science as the current epidemiology in the US is poorly understood.Create policies that provide coverage for care and caregivers.Treat ALS/MND as the non-partisan issue that it is.ALS/MND nonprofitsAmplify and serve the diverse People Living with ALS/MND.Focus on your core competencies and celebrate the successful efforts & results across the Community. Work together toaddress the critical gaps that are preventing real progress.Don’t treat us as mere fundraising opportunities for your organization. We are the people you serve andmust be involved in every facet of operations, including your board of directors.*The ALS ClockThis disease will kill 50% of us within 3 years, it will kill 90% of us within 5 years.Our lives are worth saving. Work withthatkind of urgency.This document was created by those living with and impacted by ALS/MND.TwitterEmailProudly powered by WordPress.