1. Summary of strategic review process for development of current SP Alliance Meeting 2010 GCU Strategic Review presented Group discussion to identify key objectives to inform development of strategic plan Alliance Meeting 2011 Draft Strategic Plan presented to members Group discussion on the draft plan Vision, Mission and Objectives confirmed Working groups established Working group review undertaken and report with recommendations submitted to board June 2012 Alliance Meeting 2012 Working group reports to members Board report on actions for 2013 Working group discussion on actions and working group responsibilities in 2013

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

3. 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

4. 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

5. 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

6. Strategic Objectives 2012 to 2015 1.To develop the operational structure required to achieve our objectives 2.To develop and enhance membership, partnerships and programs 3.To facilitate the exchange of information on ALS/MND care, education and research 4.To build a sustainable operating/funding model for the Alliance

7. 1.To develop the operational structure required to achieve our objectives Re co m m en d Actio n w h o W h e n Deli vera ble D a t e d o n e Re vie w loc ati on of offi ce J e f f J u l y Agre emen t rene wed Re cru it Alli an ce Co ord ina tor B o a r d J e ff, G u dj o n, J e n s, C a r ol J u l y t o D e c Host org identi fied De vel op bo ard rec ruit me nt pro ce ss B o a r d M a r c h A p r i l WG’s estab lished Final Repo rts to board Plan devel oped and prese nted to mem bers A p r i l Re cru it Ex ec uti ve Dir ect or F R W G J e f f, G u d j o n, J e n s, C a r o l E D J u n e J u l y t o D e c 2 0 1 2 / 2 0 1 3 Fundi ng Plan devel oped PD writte n Recr uitme nt proce ss agree d ED recrui ted DRAFT ACTIONS 1.Renew agreement with MNDA until Dec 2012 2.Investigate member org. willing to base coordinator 3.Develop ongoing plan for WG’s 4.Fundraising Plan to increase funds in short term – refer to funding WG –Develop ED position description –FRP to fund ED position Key Rec’dations Draft ActionsOutcomes 2015 Review location of office Renew agreement with MNDA until Dec 2012 Achieved Recruit Alliance Coordinator Investigate if a member org. is willing to base and support coordinator Develop position description Achieved Develop board recruitment process Establish working groups (WG) Identify coordinators Develop ongoing plan for WG’s Achieved Recruit Executive Director 1.Fundraising Plan to increase funds in short term 2.Develop position description 3.FRP to fund ED position 1.Funds increased 2.General manager position established

8. To develop and enhance membership, partnerships and programs: Membership Key Recommendations Draft Actions Outcomes Undertake a review of membership fee structure Adopted by members Dec. 2013 Achieved

9. To develop and enhance membership, partnerships and programs: Partnerships Key R’dations Draft ActionsOutcomes Develop organisational support Identify Partnership Program Committee Develop ‘Tool box’ of information on website Develop selection criteria for evaluating grant applications and distribute to members Achieved In progress Achieved Increase fundingDevelop proposals that tell our success stories Develop website to support online donations and philanthropy Ongoing Achieved Improve communication on the Partnership Program internally and externally Presentations at ALS/MND conferences worldwide, Alliance meeting, ALS/MND Symposium Develop partnership information on website Ongoing Achieved Encourage members to be involved and committed to supporting the Partnership Program Provide a Partnership Program report at the Annual Meeting and an opportunity for discussion including Needs and Offers Develop a mentorship program Establish regional - geographic and issue/expertise specific -collaborations Achieved In progress Ongoing

10. To develop and enhance membership, partnerships and programs: Programs Key Rec’dations Draft ActionsOutcomes Better coordinate the Support (Travel) Grant and ensure greater transparency and promotion 1.Identify Support Grant program committee and inform members annually 2.Update Support Grant information package 3.Develop Marketing Plan 4.Publish information on website 1.Achieved 2.Achieved 3.Ongoing 4.Achieved Clarify the role the Alliance plays in Ask the Experts Clarify the criteria for choosing the experts and content Survey attendees and evaluate Live stream or record Enhance website to enable links to recorded sessions on YouTube and online blogs, feedback, Q and A Ongoing To do Achieved Ongoing Review program development for Alliance Meeting and enhance communication and engagement Establish program committee Change set up of tables Identify members willing to translate presentations Upload presentations to website and include translated versions if available Record meeting for members not attending the meeting Include a review session at end of meeting program and identify facilitator to draw conclusions on how the Alliance might use information received that year Achieved Ongoing Not achieved Do this year!

11. To develop and enhance membership, partnerships and programs: Programs - ctd Key Rec’dations Draft ActionsOutcomes Ensure the Allied Professionals Forum is well promoted and well coordinated with the schedule of the general symposium. 1.Promote on the Alliance website and to members 2.Publish overview of the APF surveys on the Alliance website 1.Achieved and ongoing 2.To do More effectively market the Forbes Norris and Humanitarian Awards Improve transparency of the awards selection process 1.Use website effectively to inform community about past and present winners 2.Distribute media release announcing recipients 3.Winners to serve as ambassadors and promote award and talk about ALS/MND year-round 1.Inform members about the candidate selection criteria for each award 2.Committee identified and discussed at the annual meeting 1.Achieved 2.Ongoing 3.?? 1.Achieved 2.Achieved

12. To facilitate the exchange of information on ALS/MND care, education and research Key Rec’dationsDraft ActionOutcomes Redevelop the website and on-line library 1.Develop website design 2.Develop Budget and identify funding 3.Engage web developer 4.Develop social networking opportunities All Achieved Enhance engagement with Alliance members between annual meeting 1.Gather information from members 2.Write and distribute bulletin quarterly Achieved and ongoing Ask the Experts and APF sessions available on-line 1.Film and record meetings 2.Upload to website or YouTube Established and ongoing

13. To build a sustainable operating/funding model Key Re’dationsDraft ActionsOutcomes Increase subscription fees Analysis of fees currently paid – amounts and levels Measurement of impact of changes Achieved To do APF and Annual Alliance meeting to run at a profit every time Formalise price setting mechanism Develop and monitor cost centre budget Develop sponsorship package Ongoing Achieved Establish a range of new initiatives to enhance income and ensure sustainability of the Alliance Develop a legacy/bequest giving program Examine opportunities for start up funding for administration and CEO/ED Develop an International donations program Explore joint fundraising opportunities with other neuro groups Centrally designed FR activity for members - % to the Alliance Major events – concert/soccer match To do Ongoing Everyday hero established To do To review Develop named specific projects to appeal to large gift funders Organisations to self identify needs Needs based project and funding submission developed To do Global Day fundraising for Alliance - “the international fight against ALS/MND” Present idea to Alliance members Funds directed to the Alliance for partnership projects and international development Established Improve rationale of Alliance to broaden appeal to funders Update mission statement Seek funding from EU etc

14. Draft – objectives 2016 to 2019 Draft Greater focus on Advocacy and research – NB communications and awareness underpins all these objectives: 1.ADVOCACY: To influence communities, governments and other international organisations to support the interests of plw ALS/MND globally 2.MEMBERSHIP: To grow membership and promote the establishment of support organisations where none currently exist 3. PARTNERSHIPS: To promote, support and enhance the Alliance Partnership program 4.INFORMATION: To facilitate, promote and review the exchange of information on ALS/MND care, education and research 5.FUNDING: To build a sustainable operating and funding model for the Alliance

15. Alliance membership Benefits of being a member of the Alliance Why is the Alliance important to your organisation? Think about - what outcomes would you like the Alliance to achieve in the next 3 years related to this objective?

16. Workshop and Group Discussion – 2015 To help us develop the Alliance Work Plan for 2016 identify one goal your group would like to focus on this year to help achieve these outcomes: 1.Identified goal 2.How do we get there? 3.What will be the impact of achieving this goal? Break into 5 groups to focus on one of the strategic objectives:

17. Draft – objectives 2016 to 2019 Draft Greater focus on Advocacy and research – NB communications and awareness underpins all these objectives: 1.ADVOCACY: To influence communities, governments and other international organisations to support the interests of plw ALS/MND globally Sara and Carol 2.MEMBERSHIP: To grow membership and promote the establishment of support organisations where none currently exist Kiki and Theresa 3. PARTNERSHIPS: To promote, support and enhance the Alliance Partnership program Evy and Jens 4.INFORMATION: To facilitate, promote and review the exchange of information on ALS/MND care, education and research Steve and Bob 5.FUNDING: To build a sustainable operating and funding model for the Alliance Barb and Efrat