1. United in the worldwide fight against ALS/MND
GOAL:
A world free of ALS/MND
TAGLINE/BRANDING:
United in the worldwide fight against ALS/MND

2. VISION:
We will engage with our members, prospective members and other organisations to share resources globally, to advance awareness and to promote the support of people living with ALS/MND worldwide

3. VALUES The Alliance is committed to the following values:
Our service is to the organisations supporting people living with ALS/MND
We will contribute to improving quality of life for people living with ALS/MND
We encourage, support and value innovation and research for people living with ALS/MND
We respect and value the contribution made by all members
We act responsibly, maintain professional integrity and engage and collaborate with the ALS/MND community worldwide

4. MISSION STATEMENT
Our Mission as the International Alliance of ALS/MND Associations is:
To promote optimal care and support for all people living with ALS/MND
To facilitate information exchange and education at an international level
To encourage collaboration, dissemination and translation of ALS/MND research

5. Strategic Objectives 2016 to 2019 Draft
ADVOCACY: To influence communities, governments and other international organisations to support the interests of plw ALS/MND globally
MEMBERSHIP: To grow membership and promote the establishment of support organisations where none currently exist
PARTNERSHIPS: To promote, support and enhance the Alliance
Partnership program
INFORMATION: To facilitate, promote and review the exchange of information on ALS/MND care, education and research
FUNDING: To build a sustainable operating and funding model for the Alliance

6. 1. ADVOCACY: To influence communities, governments and other international organisations to support the interests of plw ALS/MND globally
Goals
Outcomes
Updated PALS/MND Rights Document developed for use by all members to support global advocacy efforts
Rights of PALS/MND reviewed, updated and approved
PALS/MND Rights Document launch on Global Day
Launched on Global Day 2016
Formally endorsed by over 26 member associations
Used to support Global Day campaign
Rights Document used to support advocacy internationally
Shared widely on social media
Distributed to members to support advocacy

7. 2. MEMBERSHIP: To grow membership and promote the establishment of support organisations where none currently exist
Goals
Outcomes
Online resource created to communicate the benefits of membership
The “Member Testimonials” form posted to the Alliance website - collection of responses is ongoing.
8 new members since last meeting
Increased engagement with members and potential members in Asia Pacific region and support for the establishment of the Pan Asian Consortium for Research and the Treatment of ALS (PACTALS)
Mid year member engagement visit – met existing AP members: Asha Ek Hope, MND Malaysia, MND Taiwan and with potential members ALS Indonesia and the Korean ALS Association.
Korean ALS association admitted as members December 2016
Attended and presented at PACTALS
Perth Australia confirmed for 2019 meetings

8. 3. PARTNERSHIPS: To promote, support and enhance the Alliance Partnership program
Goals
Outcomes
Needs and offers program updated and formalised
“Needs and offers” incorporated into the forum feature – members can communicate in a protected space to request any resources they might need, and to share other kinds of information and resources openly with other members.
Members only online forum created
Members only site, including the forum page, launched
Regional mentoring groups developed and formalised
Google sheet developed and distributed to members
Mentors identified in all regions
2 partnerships, 4 meeting travel grants funded in 2016

9. 4. INFORMATION: To facilitate, promote and review the exchange of information on ALS/MND care, education and research
Goals
Outcomes
Resources in a variety of languages available on the website
Existing USEFUL LINKS page with links to information in a variety of languages is being updated
Alliance blog created and members engaged in providing content
Blog launched on 21 June, Global ALS/MND Day
Greater outreach and engagement with members
Newsletters quarterly have seen record participation from members
Added 300+ Facebook “likes” and 500+ Twitter follows in 2016
Information available on the research funds provided by member associations
Questionnaire distributed to members
Preliminary results to be presented at meeting
Ideas for future research collaborations identified to encourage cross organisational engagement
For discussion at meeting based on results presented

10. 5. FUNDING: To build a sustainable operating and funding model for the Alliance
Goals
Outcomes
A virtual “Global Walk” using Fitbit, to culminate at the Annual Alliance Meeting
Walk in progress!
Funding from Pharmas/others to support the partnership program
Proposal drafted for % of funds from City Swims to be directed to the Alliance
Sponsorship secured to ensure Annual Meetings break even
Sponsorship secured: Cytokinetics £15,000.00
(Plus 3 additional table sponsors of £500 each)
(Plus $8000 from ALS Hope for APF)
PALS/CALS lunch Sponsorship secured: Cytokinetics $