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

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 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

1.To develop the operational structure required to achieve our objectives

DRAFT ACTIONS1. Renew agreement with MNDA

until Dec 20122. Investigate member org.

willing to base coordinator3. Develop ongoing plan for

WG’s4. 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 Actions Outcomes 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

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

To develop and enhance membership, partnerships and programs: Partnerships

Key R’dations Draft Actions Outcomes 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 funding • Develop 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

To develop and enhance membership, partnerships and programs: ProgramsKey Rec’dations

Draft Actions Outcomes

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 • Ongoing • Ongoing • Not achieved • Do this year!

To develop and enhance membership, partnerships and programs: Programs - ctd

Key Rec’dations Draft Actions Outcomes

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

4. Inform members about the candidate selection criteria for each award

5. Committee identified and discussed at the annual meeting

1. Achieved 2. Ongoing 3. ??

4. Achieved 5. Achieved

To facilitate the exchange of information on ALS/MND care, education and research

Key Rec’dations Draft Action Outcomes Redevelop the website and on-line library

1. Develop website design 2. Develop Budget and identify

funding3. Engage web developer4. 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

To build a sustainable operating/funding model

Key Re’dations Draft Actions Outcomes 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 • 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 • 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

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 research5. FUNDING: To build a sustainable operating and funding model for

the Alliance

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?

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 goal2. 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:

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 Carol2. MEMBERSHIP: To grow membership and promote the

establishment of support organisations where none currently existKiki 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 Bob5. FUNDING: To build a sustainable operating and funding model for

the Alliance Barb and Efrat