Step 1: Determine your goals

What do you want to do, learn, and share? This can be as profound as saving your child from chronic illness, disability or death or as crucial as revitalizing your organization. Look at these questions with new eyes, and ask other individuals related to your cause about their thoughts and desires.

Although a facilitator can greatly enhance strategic planning to establish goals, objectives, and plans (short and long term) this exercise can help you focus, particularly if your organization is very new or small – or not established yet. A facilitator can be even more helpful (and the right one may be easier to identify) if you already have a sense of the range of your goals.

Brainstorm!

Describe what you want to accomplish – be visionary! Consider a cure, treatment, clinical trials, diagnostic tests, support for affected individuals, basic research, clinical research, funding, clinician education, advocacy, services and support. Think both about what people have asked for and what you would love to do, if you could do anything. The sky is the limit - dream!

That said, it can be hard to sit down and come up with lots of big ideas on command. Some groups – sometimes just one harried parent who met another one online and somehow got tapped to start a support group – may be so overwhelmed by an ever-growing to-do list that they are drowning in details. Give yourself permission to start with a list of concrete tasks. Then step back and try to think about the general theme.

Conversely, a developing group might know exactly what it's major goals are but be fuzzy about how to get there. Give yourself permission to start with a very general statement, and use that as a platform for generating ideas about what to do to support it. Don't be afraid to start with your personal experience, and your personal needs. You'll probably find it's easiest to add to, or revise, a starting point rather than a blank slate.

Once you have your goals listed, put them in priority order. You may also wish to list them in order of what is easiest to accomplish, or what can be accomplished most quickly. The idea is simply to start organizing those goals, so that they will flow more easily into a plan of action as you get the rest of the pieces into place.

This goal creates an opportunity to answer the question, "How?"

This group might choose to create a brief trifold brochure with basic information and contact information for the group. They would probably want to develop contacts with state newborn-screening programs and pediatricians to get advice and review for the brochure, and to find avenues to get the brochure to the right people. They might want to develop a network of peer-to-peer support leaders.

As they generate that list of tasks, general themes will emerge: enlist physicians who can help create or fact-check basic information pieces; identify state-program and healthcare-community contacts and establish communication with them; generate support information for far-flung support-group contacts; create a plan for brochures and handouts from concept to printing.

These goals – a to-do list combining discrete tasks and larger multi-step projects – have two major themes: building a formal organization and getting the word out about the condition.

Those themes identified, the group will be able to revise this plan of action, chunk out the tasks in pieces that are closer to bite-sized, and fill in the pieces that are missing from this list – like building a contacts database, information dissemination, identifying professionals to help with tax and legal issues, and developing their grantsmanship.

These are goals that weren't even on the table for most organizations as recently as 10 years ago. However, they are today. With large-scale, yet focused, goals like this, your group will need to learn about alliances with the research community and the necessary organizational infrastructure that will transform a group of families with a genetic condition in common into major contributors to the advance of research and discovery of treatments.

» Step 2: Characterize the condition