Program
This meeting will be held virtually this year over three days, 30 November-2 December, to accommodate time zones and prevent virtual meeting fatigue.
This year the Alliance meeting will include a scientific update, presentations from allied global charities, and ALS/MND Connect. Themes for the 2020 meeting include:
Theme 1: Advocacy
How has your organization been successful in advocating to government or the healthcare system on specific issues and what strategies and tactics were utilized? How does your organization interact with/influence/negotiate with the government?
Theme 2: Research and Science
How is your organization covering information on research and distributing it to your members? What is the role your organization plays in progressing or disseminating research?
Theme 3: Programming for PALS/CALS
What innovative programs and services does your organization offer for people with ALS/MND? How do you identify the needs of PALS/MND and how do you work to create programs to address those needs? Tell us about programs you have to assist PALS/MND in travel; serve families and children; provide counseling or psychological support; provide caregiver or home health; provide equipment/assistive technology; or provide early intervention. How does your organization fund the services and programs that you provide? Please share successful programs or share challenges you have encountered and how obstacles were overcome.
Theme 4: Organizational Development
How does your organization develop strategies to help meet budget goals? How do you recruit and retain donors/volunteers? What are your sources of income, and what role does fundraising play? Do you use the internet or social media to raise funds, raise awareness or advocate? How do new organizations get started and how do established organizations thrive? Are there specific governance issues your organization has successful overcome?
Theme 5: Looking to the Future
With new treatments emerging, and the idea of ALS/MND eventually becoming a treatable disease, what considerations are your organization taking into account and what are you doing to prepare to address the needs? What changes are being made in engagement strategies or service delivery models?
Full agenda:
Monday, November 30, 2020
| GMT | EST | JST | Presentation | Speaker |
| 12:00pm - 2:00pm | 7:00am - 9:00am | 9:00pm - 11:00pm | Welcome, Research & Science | |
| The Australian Summit for MND Research: A collective impact approach to tackling MND | Gethin Thomas | |||
| Zoom Talks with ALS/MND World Experts: A Story of Success during the Pandemic | Pablo Aquino | |||
| Using a Design-Build Approach to Improve International ALS Research News Access in Italy | Silverio Conte | |||
| Scientific Advisory Council Q & A | SAC |
Break
| 2:15pm- 4:15pm | 9:15am- 11:15am | 11:15pm 1:15am (+day) | Leveraging Digital Inclusion to Increase Access to Programs and Services | Kimberly Maginnis |
| Leveraging Digital Inclusion to Increase Access to Programs and Services | Jodi ODonnell-Ames | |||
| The Use of Statistics for Awareness | Lee Millard | |||
| Quality of care and adherence in ALS in Russia | Gleb Levitsky |
Tuesday, December 1, 2020
| 12:00pm - 2:00pm | 7:00am - 9:00am | 9:00pm - 11:00pm | Looking to the Future - How do others do it + Q&A | CF |
| How ALS Liga Belgium looks to the future | Evy Reviers | |||
| ALS doesn’t stop, neither did we – how COVID-19 helped us challenge the status quo in community engagement | Natalie Russell | |||
| Realigning Care during the COVID Crisis and lessons learnt | Nick Goldup | |||
| Meeting the Challenge of ALS During COVID-19 | Andrea Pauls Backman | |||
| Home Influenza Immunization during COVID-19 | Francisco Rotta |
Break
| 2:15pm- 4:15pm | 9:15am- 11:15am | 11:15pm -1:15am (+day) | ALS/MND Connect | Jinsey Andrews, Chris McDermott, Janice Robertson, and Ludo VanDen Bosch |
Wednesday, December 2, 2020
| 12:00pm -2:00pm | 7:00am -9:00am | 9:00pm -11:00pm | The Person w ALS & the revocation of Informed Consent pursuant to Law 219/2017 | Grazia Micarelli |
| ALS Focus: A new survey program informed by people with ALS and caregivers | Sarah Parvanta | |||
| Innovation and Technology Committee update | Nick Goldup |
| 2:15pm- 4:15pm | 9:15am - 11:15am | 11:15pm -1:15am (+day) | Industry Roundtables - The Patient Journey |
| 11:00pm- 1:00am (+day) | 6:00pm -8:00pm | 8:00am- 10:00am (+day) | A Review of the Alliance Website by the PCAC and Recommendations Members Can Use on Their Own Websites | Sara Feldman + Phil Green |
| Who said it can't be done? When working as one brings great results - AM4MND | Kathy Nightingale | |||
| International Advocacy - Abstract Follow up |