Annual Alliance Meeting
The Annual Alliance Meeting is an opportunity for member associations to meet and share advances in supporting people living with ALS/MND. It is a chance for representatives of ALS/MND associations from around the world to discuss organisational development and planning, patient care and funding, as well as the role and activities of the Alliance and its Board of Directors and Advisory Councils. This meeting will be held virtually this year over three days to accommodate time zones and prevent virtual meeting fatigue from November 30 – December 2. Members, please log into the Members Section of the website to register or contact the Alliance Staff at email@example.com
This year the Alliance meeting will include a scientific update, presentations from allied global charities, and ALS/MND Connect.
THEMES FOR 2020:
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?
The Programme Committee
Tammy Moore, ALS Canada
Calaneet Balas, The ALS Association
Kiki Qu, Taiwan MND Association
Gudjon Sigurdsson, MND Association of Iceland
Leslie Ryan, ALSA
Florence Maeder, ALS Schweiz