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

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

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

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

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

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

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

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

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

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 $2000.00