27th Annual Alliance Meeting
1-2 December 2019
All members are invited to submit a presentation to be considered for the 2019 Alliance Meeting agenda. The 27th Annual Meeting will take place on 1-2 December in Perth, Australia.
Alliance Meeting presentations will be grouped by themes.
Please read the detailed instructions below and then fill out the attached abstract form. The deadline for abstract submissions is 28th June.
You are invited to present subject matter pertaining to any of the themes outlined below. All presentations must fit into one of these themes.
The Programme Committee does not guarantee that all abstracts will be accepted for presentation. The Committee will review all abstracts submitted by the deadline and make a decision based on the presentation time available and the quality of the work submitted.
Themes for Perth, 2019:
Theme 1: Partnerships and Collaborations
How has your organization been developing partnerships or mentorships? How does your organization establish and maintain partnerships? What have been the outcomes of these collaborations?
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: Stakeholder Engagement
How does your organization include PALS in your work? Have you surveyed PALS for their input? How does your organization help empower PALS/CALS, engage the research community, advocate for PALS/CALS or communicate with physicians and health care providers?
Theme 5: 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 6: 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 7: 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 Alliance Meeting will also feature an invited scientific speaker and a roundtable discussion, to be announced at a future time.
Presentations are typically 10 minutes long, with an additional 5 minutes allotted for questions from the audience. A slide (Power Point) presentation is helpful. The presentations will be given in blocks, according to the themes listed above.
To submit an abstract, use the form below! The deadline is 28th June
Abstracts should be submitted by MEMBERS ONLY. Non-members may request special permission by emailing the General Manager at email@example.com.
The Programme Committee
Sara Feldman, ALS Hope Foundation
Kiki Qu, Taiwan MND Association
Gudjon Sigurdsson, MND Association of Iceland