How to Develop a Headache Organization

Introduction

Headache disorders affect men, women and children everywhere in the world. They are often disabling and burdensome.Developments in research in recent years have brought huge strides in the understanding of headache disorders and their management. But it may be many more years before “cures” emerge.In the meantime, people with headache disorders and their families and communities need support and practical help. Creating a headache organization is one of the most effective ways to achieve help for the largest number of people possible. An organization can help to co-ordinate, guide and advise local activities. Once an association is up and running, it raises public awareness which leads to increased resources for both care and research.First steps

  • Involve a few interested people–headache sufferers, their carers and professionals
  • Find out if your country already has similar organizations (ask Ministry of Health, WHA, WHO, Church)
  • Establish a contact name, address and telephone number
  • Organise a public meeting
  • Advertise the public meeting in newspapers, local radio, hospitals, clinics,
  • pharmacies and libraries
  • Agree at the public meeting to setup an organization

Initial decisions

  • Form a small committee
  • Appoint a chairperson and treasurer with term of office
  • Nominate medical/scientific advisors
  • Hold regular meetings
  • Define initial aims
  • Divide up tasks
  • Establish priorities you need money for

Identifying aims and services

Your organization may want to:

  • educate and raise awareness about headache disorders
  • help headache sufferers find quality care
  • provide community support for headache sufferers and their families
  • encourage the government to recognize the burden of headache disorders on the community and allocate resources to care, treatment and research
  • work with other groups to help headache sufferers around the world

To meet the aims established, you may wish to:

  • establish self-help groups
  • publish a newsletter
  • provide information
  • raise public policy issues with your government
  • set up membership to provide on-going support, communication (and raise money!)
  • provide support services such as helplines
  • offer training
  • raise awareness with public, media and government during Awareness Day/Week/Month activities
  • raise money to pursue the above aims and activities

Projects and activities

  • Find administrative/secretarial help (may need to be volunteer to start)
  • Advertise and appoint an Executive Director, if resources are available
  • Find space to maintain the organisation’s records — an office or even a room or table will do to start
  • write a simple constitution (examples are available from WHA)

Useful characteristics of volunteers

  • Capacity to get along with other people
  • Experience and knowledge of the burden of headache disorders
  • Capacity to listen
  • Time to give
  • Business or fund-raising experience
  • Professional skills — e.g. doctor, social worker, nurse, psychologist, lawyer
  • Absence of major personal problems
  • People with energy, ideas and motivation
  • Willingness to learn and work

Recruiting volunteers

  • Ensure adequate preparation in the organization before recruiting — by providing training, support supervision and practical resources such as phone, desk, chair an instruction manual!
  • Decide on role of volunteers in the organization — caring, administrative, practical etc. and their relationship with paid staff
  • Agree on the skills needed by the volunteers — financial, PR (public relations), administrative, supportive, etc.
  • Think of where to find volunteers — other organizations in the community, colleges, universities, advertising in clinics, etc.
  • Consider how to find suitable volunteers — advertising, word of mouth, etc.
  • Decide what the organization can offer volunteers — experience, satisfaction of meeting and helping people, training, etc.
  • Try to provide what volunteers want from the organization — job description and satisfaction, information, guidance, support and recognition.

Likely reasons for needing money

  • Telephone, Answering machine, Fax
  • Postage
  • Rent of room/office
  • Computer equipment and email
  • Stationery
  • Photocopying
  • Travel expenses
  • Newsletter
  • Publications
  • Part-time or full-time person in office
  • Executive Director plus administrative assistance (ideally)

Ways of raising money

  • Subscription fees from members
  • Donations from members
  • National and local government grants
  • Grants from national religious organizations
  • Sponsorship from drug companies (but without conditions attached — WHA has policy guidelines to help)
  • Legacies
  • Sponsorships from business and industry
  • Fund-raising events
  • Direct mail
  • Donations in kind (services and office or other needed products instead of cash)

How to provide information

  • Answer inquiries quickly, efficiently and sensitively by telephone, letter and email
  • Have professional advice available
  • Prepare fact sheets
  • Develop publications for key stakeholders — public, people with headache, employers, government, funders
  • Circulate newsletter
  • Record videos
  • Offer helpline
  • Host web site

Ideas for a newsletter

  • Publish regularly — e.g. every 3 months
  • 2-4 pages each issue
  • Include questions and answers regarding headache disorders
  • Call for letters
  • Highlight a personal account
  • Review an aspect of good lifestyle management
  • Use research article (WHA’s archive has wealth of material to choose from)
  • Interesting local and national events in your country
  • Information and advice on benefits and services
  • Information on national (or other) headache organisations and meetings
  • Funding and fund-raising information
  • Ensure an attractive appearance, perhaps photos
  • Include useful names and addresses
  • Review latest headache books
  • Avoid advertisements if finances allow (or contact WHA for policy guidelines on advertising and sponsorship)

Basic fact sheets and publications

  • Headache disorders backgrounder
  • The organisation and its aims
  • How to start a self-help group
  • Up-to-date research (see WHA’s website at www.w-h-a.org for latest information) written for people with headache disorders and those who care for them
  • Legal issues
  • Training materials — governmental affairs, clear language, media relations, etc.
  • Newsletter

Support services

  • Information and advice service — e.g. telephone helpline
  • Self-help groups
  • Government lobbying for treatment and research options, employment equity and disability protection
  • Instructional and support services to schools, clinics, and other groups
  • Work with headache clinics and physicians to increase value of patient visits through community support and follow-up
  • It is often difficult for small organizations with limited resources (both human and financial) to provide services. Look for opportunities:
    to collaborate with statutory, voluntary and private organizations
    to systematically provide training to nurture and support your volunteers.

Ways of raising public awareness

  • Attractive, informative and understandable publications
  • Efficient information service
  • Membership campaigns
  • Newsletter circulation (try electronic newsletters as well as print)
  • People with headache and professionals giving public talks with slides/overheads
  • Open dialogue with politicians and forge links with governing and opposition members
  • Radio and television broadcasts
  • Staff telephone lines after media opportunities
  • Distribute posters and leaflets
  • Develop promotion materials: display stands, videos, T-shirts
  • Support research
  • Host awareness events -e.g. World Headache Awareness Month
  • Give the name and contact information for organization whenever possible.

Public policy issues

  • Establish high political priority for people with headache disorders
    Increase resources (for treatment, government sponsored research, disability allowances) for headache disorders
  • Gain recognition by obtaining membership in World Headache Alliance
  • Create and improve services for people with headache disorders
  • Create and improve benefits for people with headache disorders
  • Encourage appropriate standards for care
  • Provide training and information in lifestyle management and support
  • Improve assessment and diagnosis

Research

  • Supporting research raises awareness
  • Both epidemiological and treatment research are important
  • Governments and non-pharmaceutical sources need to be encouraged to support research
  • Members need regular updated information

You can help by:

  • providing information to people with headache disorders
  • subsidizing existing research activity
  • involving research scientists as advisers
  • ensuring focus of society remains on reducing the burden of headache disorders

How WHA can help you

World Headache Alliance (WHA) is a global cooperative of lay headache organizations from around the world whose mission is to reduce the burden of headache disorders. WHA seeks to strengthen member organizations in their activities through capacity building and encourage the formation of new associations where none currently exist. WHA disseminates information, facilitates international training opportunities and networking meetings, encourages research and stimulates public and political awareness at national and international levels.For more information email: info@w-h-a.org

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