Just keep things flowing...
If you go to the Helpful Links page, you will find outside resources on how to start a support group. My intention here is to pare that down to what worked for me; to sort of sift through it all, in an attempt to make the task less daunting for someone else.
Facilitating vs. Leading
Before we get to the basics of getting started, one thing that I believe is important to understand is the difference between leading and facilitating a group. "Facilitating" may sound like just a PC word for leading, but there is a difference. First of all, I believe it's much easier to be a facilitator than a leader. This is important because people may shy away from starting a group if they feel the need to be a "leader," or to have leadership skills. While that may be helpful, what a support group really needs is someone to keep things flowing. The word facilitate means to make things easier, or to assist in the progress of something. Organizational skills are definitely an advantage, but if all you have is a passion to start a group and help others, I would say don't let anything stop you. Just do it!
Getting Started
(for a start-up checklist without the details, go to the "start-up checklist" page)
Find a partner or organization to work with, if possible
For me that was the local chapter of the American Parkinson Disease Association's Young Onset Center. They connected me with other people who wanted to start a support group. It is preferable to have someone with whom to share the organizational responsibilities, however, it is not essential. Once the group gets going, hopefully others will step up and help you with the responsibilities. Don't be afraid to ask! Also, you can make some phone calls and see if it's possible to find a social worker, or physical therapist, or other professional associated with your particular group's needs, to possibly lead the group.
Define your group
A word to those of you targeting a specific age group. In my situation I was starting a group for young onset patients. While no one wants to exclude people from a support group, it is also important to consider the needs of the people you're trying to reach. For example, in my area, there were several Parkinson's support groups, but no groups were specifically for younger people. Different age groups, as well as people with different levels of activity in their lives, have different needs. It can be very depressing, for example, for a younger person still working and raising children, to attend a support group where most of the group members are in their 70's and 80's and somewhat inactive. Their lifestyles are completely different and therefore it can be difficult to find common ground. So, you need to have some idea of who you are targeting for your group and be okay with sticking to those guidelines. On the other hand, some common sense is warranted. While our group originally targeted 55 and under, I recently changed it to 65 and under, and we still have a member or two over that age, but it is more about lifestyle than physical age.
Another part of defining your group is deciding what your meetings will look like and how they will function. Will you have speakers, social events, time for interaction and discussion, be advocates for your cause, or all of the above? For our group, what has worked best is having a speaker every other month (we meet once a month.) On the opposite months we leave it open for discussions. You could pick a topic, but frankly I have tried that and find it's not really necessary. It depends on the people and the "personality" of your group. But you could decide to talk about medications, exercise, nutrition, or whatever. For speakers we have had physical therapists, doctors, nurses, nutritionists, complementary medicine physicians, and organizational (like the APDA) representatives. That is where a good relationship with an organization or a doctor's office comes in handy -- getting speakers to come to your group. Also consider contacting pharmaceutical reps to make connections with doctors, and possibly to sponsor your group.
Find a meeting place
For our group, it is a local library. Call around, because I found that while one local library was very uncooperative, the one in the neighboring town was extremely helpful and accommodating. In addition to libraries, you could try hospitals, churches, community rooms, senior centers, or just get creative. Keep trying until you hopefully find one that will not charge you to hold your meetings there. Have an idea of when you would like to meet, to see if that time is available. Please see this checklist for other things to consider when looking for a meeting place: /uploads/6/5/9/7/6597445/checklist_for_meeting_sites.doc
Decide when you will meet and pick a starting date
After you find a place to meet, find out what times are available. Who are the people you are trying to reach? Are they typically employed? If so, you probably want to meet on an evening or weekend. Are they retired and would prefer meeting during a weekday? Are they able to drive themselves or will they need a ride? Most people in my group were very grateful to have found an evening group because they are still employed, but on the other hand that might provide challenges for those who, for example, can't drive at night. How often will you meet? Once a month? Which day? You could make yourself crazy trying to please everyone, so just try and figure out the situation of the majority of the people you are trying to reach. I looked at the library's (where we were going to meet) calendar online and saw that the meeting room was typically open on Monday nights, so that's what I chose.
Make an informational flyer
Choose a name for your group and create a flyer. Include the who, what, when, where and why of your group.
Here is a sample: /uploads/6/5/9/7/6597445/edited_yopd_flyer_for_weebly_site.doc
Distribute copies or fax it to your specialist (in my case, neurologist and movement disorder specialist), to your local organization (in my case the APDA), and anyone else you think might be willing to pass along the information to your target group.
Figure out how to reach people to attend your group
What worked best for me was contacting (by email) local newspapers and asking them to run a story about starting my group. I found that all those that I contacted were very willing. Don't forget local online news sources which are becoming more and more common. They will want to do it as a human interest story, so be prepared to talk about yourself. Ask them if they would be willing to email you questions instead of interviewing you in person. Also ask how many words they are working with for their story. Keep your answers brief and only include the most important facts and pieces of your story. Otherwise they will just edit it to death anyway. Be sure to provide them with contact information for your group (for example, your e-mail address) and ask them to include that in the story so that others can reach you. You may want to consider setting up a separate e-mail account just for your group activity.
The second thing that worked well was starting a website on Meetup.com. This will allow people to find you on the Internet. This was the only aspect of starting my group that involved a cost. You can try to get financial help from an organization, or look for sponsors for your website, or once the group gets started, you can ask members to pitch in to cover the cost. I personally did not want to have to charge people to be in the group, so fortunately, so far, I have been able to cover the cost of the website ($90 for six months) by other means. Meetup is not perfect, and sometimes confusing, however, I have found it very helpful in communicating with my group, and allowing others to find us. Check it out at http://www.meetup.com/
The third thing that brought members to my group was the relationship I have with my neurologist's office and the organization that helped me get started, the American Parkinson Disease Association's Young Onset Center. Both of those had, and continue to have, contact with other people with Parkinson's, and are able to refer them to my group. My neurologist keeps a supply of my group flyers in his exam rooms.
What did not work for me: Putting flyers up in the community (coffee shops, libraries, etc.) and faxing other neurologists' offices with whom I had no relationship. Posting on Craig's list and other online free listings also did not work.
Check the "helpful links" page for additional information
Facilitating vs. Leading
Before we get to the basics of getting started, one thing that I believe is important to understand is the difference between leading and facilitating a group. "Facilitating" may sound like just a PC word for leading, but there is a difference. First of all, I believe it's much easier to be a facilitator than a leader. This is important because people may shy away from starting a group if they feel the need to be a "leader," or to have leadership skills. While that may be helpful, what a support group really needs is someone to keep things flowing. The word facilitate means to make things easier, or to assist in the progress of something. Organizational skills are definitely an advantage, but if all you have is a passion to start a group and help others, I would say don't let anything stop you. Just do it!
Getting Started
(for a start-up checklist without the details, go to the "start-up checklist" page)
Find a partner or organization to work with, if possible
For me that was the local chapter of the American Parkinson Disease Association's Young Onset Center. They connected me with other people who wanted to start a support group. It is preferable to have someone with whom to share the organizational responsibilities, however, it is not essential. Once the group gets going, hopefully others will step up and help you with the responsibilities. Don't be afraid to ask! Also, you can make some phone calls and see if it's possible to find a social worker, or physical therapist, or other professional associated with your particular group's needs, to possibly lead the group.
Define your group
A word to those of you targeting a specific age group. In my situation I was starting a group for young onset patients. While no one wants to exclude people from a support group, it is also important to consider the needs of the people you're trying to reach. For example, in my area, there were several Parkinson's support groups, but no groups were specifically for younger people. Different age groups, as well as people with different levels of activity in their lives, have different needs. It can be very depressing, for example, for a younger person still working and raising children, to attend a support group where most of the group members are in their 70's and 80's and somewhat inactive. Their lifestyles are completely different and therefore it can be difficult to find common ground. So, you need to have some idea of who you are targeting for your group and be okay with sticking to those guidelines. On the other hand, some common sense is warranted. While our group originally targeted 55 and under, I recently changed it to 65 and under, and we still have a member or two over that age, but it is more about lifestyle than physical age.
Another part of defining your group is deciding what your meetings will look like and how they will function. Will you have speakers, social events, time for interaction and discussion, be advocates for your cause, or all of the above? For our group, what has worked best is having a speaker every other month (we meet once a month.) On the opposite months we leave it open for discussions. You could pick a topic, but frankly I have tried that and find it's not really necessary. It depends on the people and the "personality" of your group. But you could decide to talk about medications, exercise, nutrition, or whatever. For speakers we have had physical therapists, doctors, nurses, nutritionists, complementary medicine physicians, and organizational (like the APDA) representatives. That is where a good relationship with an organization or a doctor's office comes in handy -- getting speakers to come to your group. Also consider contacting pharmaceutical reps to make connections with doctors, and possibly to sponsor your group.
Find a meeting place
For our group, it is a local library. Call around, because I found that while one local library was very uncooperative, the one in the neighboring town was extremely helpful and accommodating. In addition to libraries, you could try hospitals, churches, community rooms, senior centers, or just get creative. Keep trying until you hopefully find one that will not charge you to hold your meetings there. Have an idea of when you would like to meet, to see if that time is available. Please see this checklist for other things to consider when looking for a meeting place: /uploads/6/5/9/7/6597445/checklist_for_meeting_sites.doc
Decide when you will meet and pick a starting date
After you find a place to meet, find out what times are available. Who are the people you are trying to reach? Are they typically employed? If so, you probably want to meet on an evening or weekend. Are they retired and would prefer meeting during a weekday? Are they able to drive themselves or will they need a ride? Most people in my group were very grateful to have found an evening group because they are still employed, but on the other hand that might provide challenges for those who, for example, can't drive at night. How often will you meet? Once a month? Which day? You could make yourself crazy trying to please everyone, so just try and figure out the situation of the majority of the people you are trying to reach. I looked at the library's (where we were going to meet) calendar online and saw that the meeting room was typically open on Monday nights, so that's what I chose.
Make an informational flyer
Choose a name for your group and create a flyer. Include the who, what, when, where and why of your group.
Here is a sample: /uploads/6/5/9/7/6597445/edited_yopd_flyer_for_weebly_site.doc
Distribute copies or fax it to your specialist (in my case, neurologist and movement disorder specialist), to your local organization (in my case the APDA), and anyone else you think might be willing to pass along the information to your target group.
Figure out how to reach people to attend your group
What worked best for me was contacting (by email) local newspapers and asking them to run a story about starting my group. I found that all those that I contacted were very willing. Don't forget local online news sources which are becoming more and more common. They will want to do it as a human interest story, so be prepared to talk about yourself. Ask them if they would be willing to email you questions instead of interviewing you in person. Also ask how many words they are working with for their story. Keep your answers brief and only include the most important facts and pieces of your story. Otherwise they will just edit it to death anyway. Be sure to provide them with contact information for your group (for example, your e-mail address) and ask them to include that in the story so that others can reach you. You may want to consider setting up a separate e-mail account just for your group activity.
The second thing that worked well was starting a website on Meetup.com. This will allow people to find you on the Internet. This was the only aspect of starting my group that involved a cost. You can try to get financial help from an organization, or look for sponsors for your website, or once the group gets started, you can ask members to pitch in to cover the cost. I personally did not want to have to charge people to be in the group, so fortunately, so far, I have been able to cover the cost of the website ($90 for six months) by other means. Meetup is not perfect, and sometimes confusing, however, I have found it very helpful in communicating with my group, and allowing others to find us. Check it out at http://www.meetup.com/
The third thing that brought members to my group was the relationship I have with my neurologist's office and the organization that helped me get started, the American Parkinson Disease Association's Young Onset Center. Both of those had, and continue to have, contact with other people with Parkinson's, and are able to refer them to my group. My neurologist keeps a supply of my group flyers in his exam rooms.
What did not work for me: Putting flyers up in the community (coffee shops, libraries, etc.) and faxing other neurologists' offices with whom I had no relationship. Posting on Craig's list and other online free listings also did not work.
Check the "helpful links" page for additional information