Why Go There?

Do you really want to found, maintain, or work for an advocacy organization? If you are using this guide, then your answer to this question is obviously yes. But we pose the question because founding or maintaining an advocacy organization is not always an anticipated and deliberate activity. You may have come to this place in response to a deeply personal and painful experience. You may have come to it because you believe in the power of people helping people.

Even if you are doing this purely as your occupation, you probably have a personal connection with someone, somewhere, who could have benefited, or did benefit, from an advocacy organization. Whatever your point of entry, it helps to listen to the stories of others who have come to this place.

This guide does not deal very much with the stress and anxiety the advocacy organization leader may face. It is important that you find resources to renew yourself. Particularly if you have an affected family member, you have a great burden on your shoulders and will need to have support along the way.

Occasionally advocacy organizations have a strong sense of their mission. This mission might not meet a need that you perceive. You may contemplate starting another group for the condition. Genetic Alliance neither endorses nor condemns such a decision, aware that there are different and diverse needs from various individuals within a condition-specific community.

For example, part of the community may want the organization to focus on services for affected individuals, and another part of the organization may prefer the focus to be research. Other apparent dichotomies can arise as well. It appears there are a number of solutions to these challenges, and all of them have effective models in the advocacy community. In any case, it is best if the various groups can work together on some level. Cooperation will speed the common tasks and provide a clearer message to the affected individuals in that community.

Internal Links

+++++++++++ Sharon, the info above is great!

As the founder of a non-profit that has survived for 17 years, I am often contacted by people who want to set up a non-profit. I try to give them some ideas to ponder before they get started. In particular, I suggest that they really look at their own personal feelings and why they feel motivated to start a group.

Most people who contact me want to start a non-profit out of the goodness of their heart. If you are ALSO hoping to get a salary for helping people with a specific disease, you should be aware that this isn't likely to happen for many years if at all. Most disease-specific groups operate on a shoestring. A huge proportion of the disease organizations that make it through the first rocky years do so because the founder doesn’t need a salary. Many even put their own money into the organization when funds are short. Even successful grant writers have a hard time raising funds for a rare disease. Most foundations won't give grants to "disease-specific organizations." If there is a pharmaceutical company that makes a product for your disease, they MAY support the patient community but the FDA has a lot of rules they must follow. Most disease-specific groups solicit funds through events and individual donors. Having a huge address book of generous friends and large family who can volunteer their time is almost mandatory. It also helps to have a lawyer and accountant who know the non-profit arena who will work for free at the beginning.

Before you open any new company, even a non-profit, you need to do a lot of homework. One early task is to learn a lot about your "competition" - organizations working on the same disease or group of diseases. Find their mission statements. Learn about their activities. Compare the mission to what they are doing. Identify what they are not doing, or not doing well, that you feel you can do better. Is it part of their mission or not? (For instance, do you feel they are they focusing too much on research and not enough on support but both are mentioned in their mission?) Why would you be able to do it better? What do you want to do that they are not doing? Do you feel comfortable competing with this organization for limited funds? When you seek funding, you might be asked to state how you are different and better. You need to be able do to so graciously.

If you feel that the existing organization is basically a good organization, think about helping them improve rather than competing. If you think that your offer might not be accepted by the leadership, think about taking a written proposal to the whole board of directors. It is their job to do what is best for the disease community, not just what is best for their organization. These negotiations are bound to be very touchy and need to be approached very carefully. Even though your goal is to help the community, starting another organization or trying to drastically change an existing one can blow up in your face and tear a disease community apart. Think about every possible way your actions might benefit or harm the disease community. If you do start a competing group, you may still end up working side by side and sometimes even together. Doing so on good terms will be important. If you are starting a new group from anger, it will show.

It is a lot of work to run a non-profit. There are dozens of rules and all sorts of forms. You have to be very careful with the money you collect because it doesn’t belong to you. Like any business, you need to put together a team of people who work well together and can cover all aspects of running the business. You need a mixture of ideas people and grunt work people. Just like paid staff, you have all the same challenges with recruiting and keeping your volunteers. In the case of a disease organization, most of the members of your team will be prone to medical crises and may disappear abruptly for weeks or months. You need to plan for this to happen and have a larger staff of people who keep in touch and can pick up the slack. You need to be realistic about your own availability.

The positive side is that running a non-profit is amazingly rewarding and challenging.