Download - Meeting in a Minute: No Speaker? No Problem!
Meeting in a Minute PHA’s Growing Meeting Topic Guide
No Speaker? No Problem! Planning Fun and Informative Meetings without a Speaker
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Table of ContentsTable of ContentsTable of ContentsTable of Contents
Introduction ......................................................................................... 5
Is a Speaker Always Needed? ............................................................................... 7
Social vs. Educational meetings ........................................................................... 7
Activities and Discussion Questions ...................................................... 9
Sharing Your PH Stories ..................................................................................... 10
Educate with a Recorded Webinar ..................................................................... 11
PH Movies and Discussion ................................................................................. 11
Comedy or Game Night ...................................................................................... 12
PH Trivia ............................................................................................................. 13
Speaker Suggestions ........................................................................... 15
Long Term Survivor as Speaker .......................................................................... 16
Leader as Speaker .............................................................................................. 17
Sample Agendas ................................................................................. 19
Additional Resources/Information ...................................................... 22
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I took my mom and husband to a support
meeting for first time, I kind of hide things
about PH and was in protection mode. Well,
half way thru it mom broke down totally
which caused me for first time to really cry
about all this! The leader and social worker
[speaker] were amazing! I feel so good
getting my fears off my chest and being able
to really let them know how I feel physically
versus pretending all the time! To those who To those who To those who To those who
support, lead or are friends of mine… thank support, lead or are friends of mine… thank support, lead or are friends of mine… thank support, lead or are friends of mine… thank
you! I don’t think i could do this without you you! I don’t think i could do this without you you! I don’t think i could do this without you you! I don’t think i could do this without you
all! all! all! all!
-A PH Patient, on the PHA Facebook Page
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Introduction
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Whether you are new to organizing a support group, or have been leading and planning support group
meetings for a while, it seems to be seen as a given that each of your meetings will feature a talk by a
medical professional or some other formal presentation. While excellent speakers enhance your
meetings, don’t forget what is at the core of pulmonary hypertension support groups: coming together
to meet and find comfort and support from others living with this same, rare disease. Your meeting is a
success even if only one other patient attends and the two of you share your stories, since, by coming
together, the two of you are ending the isolation that comes with a frightening diagnosis. In this
publication, we discuss some ways you can make your group a success and provide benefit to your local
community with or without a speaker.
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Is a Speaker Always Needed?
Sometimes plans fall through. You never know
when that perfect speaker unexpectedly cancels
because bad weather affects his or her ability to
travel to your meeting. Maybe the doctor you
had scheduled months in advance will call right
before the meeting to let you know he or she
has a scheduling conflict. There are all sorts of
reasons why you may have a support group
meeting without a speaker. Even when you
organize and plan for speakers and sponsors
months in advance, things can change and you
can end up in the position of having to hold a
meeting without a speaker or educational topic.
No need to stress or cancel your meeting;
there’s plenty you can do to run a successful
meeting without a speaker. You’d be surprised
how many different options you have. You can
take advantage of this opportunity for members
to get to know one another and for your group
to set goals and plan for the future. Most
importantly, by having a meeting when your
original plans fall through, you show your group
that the group is consistent and active.
In this publication we’ll cover some options for
fun, productive and creative ways to run
meetings when you don’t have a speaker.
Social vs. Educational Meetings
Even if you have your year of meetings planned
and don’t plan on setting aside an entire
meeting for any of the suggestions below, think
about finding a way to include some of these
ideas in your upcoming meetings. Adding some
fun and games to your support group meetings
allows the mind to relax for a while and can
bring members of your support group closer
together.
Meetings can be simultaneously educational
and social, and there’s no need to limit your
meeting to being just one or the other. PH
patients and their caregivers enjoy going to
meetings with medical professionals as
speakers. These presentations provide expert
insight into relevant health topics like managing
medications and healthy eating. For this reason,
support group meetings with medical speakers
attract the many people who want more time
with and advice from medical professionals. At
the same time, support groups also draw many
people who simply want to connect with others
who live with this disease. Having a balance
between educational and social meetings is
essential for making sure that everyone gets
what they want from coming to your meetings.
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We had a new member show up. I think we really helped her to understand more about PH and treatment options which she had no idea about… she came up to talk to me at one point and said that she sometimes feels so alone because she doesn't know anyone with PH, in which I replied, "You’re not alone You’re not alone You’re not alone You’re not alone anymoreanymoreanymoreanymore."
-Mary Sisk, Savannah, Georgia PH Support Group Leader
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Activities and
Discussion Questions
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Sharing your PH StoriesSharing your PH StoriesSharing your PH StoriesSharing your PH Stories
There are so many different ways to share stories at your meeting, depending on the size of the support
group and whether members are talkative or shy. Pick a style of sharing that works best for the
members of your support group.
For small support groups, there’s plenty of time for everyone to share their stories; have members take
turns telling their diagnosis stories and how their lives have changed. For groups with larger
attendance, you might need to limit the amount of time each person gets to speak, giving each member
(who wants to speak) 5-10 minutes to share. It might be fun to have interview sessions: When a
member is taking their turn, others can ask them questions. We’ve included some questions that might
aid your group’s conversation.
Questions can also help if your group has a lot of shy members who might need prompting.
Storytelling and listening to personal stories has proven health benefits and can bring a group of people
closer together. If members of your group seem to enjoy sharing their stories, think of some ways you
can build off of this type of meeting. Maybe you’d like to make a booklet
of willing participants’ stories that you can share with newly diagnosed
patients. Some of you might be inspired to get a personal story about PH in
the local newspaper. Your story can help others and bring more attention
to PH!
Here at PHA, we have a large collection of stories written by PH patients
and family members. You can find these stories under Our Journeys on the
PHA website. www.PHAssociation.org/OurJourneys Print out a story that
you find particularly interesting and read it aloud at your meeting to give
your members an example.
• When were you diagnosed with PH?
• What‘s the best advice you’ve been given in the past year?
• What advice do you have for someone living with multiple
conditions?
• How do you explain PH to those who know nothing about the
disease?
• What do you do to unwind?
• What’s a typical day with PH like for you?
Ask Some QuestionsAsk Some QuestionsAsk Some QuestionsAsk Some Questions
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“[PHA] made a file out of the
[PIM-1] webinar that I
downloaded to my Macbook.
This gives me the freedom to
show this without worries. You
might consider downloading it
for a meeting that either you
plan or use it as a backup.”
-Stu Berwick, SGL Dallas, Texas
Leader Leader Leader Leader WordsWordsWordsWords
Educate Educate Educate Educate with a Recorded Webinarwith a Recorded Webinarwith a Recorded Webinarwith a Recorded Webinar
PHA regularly hosts educational events featuring medical professionals as
speakers and archives them in PHA Classroom. Think about showing one
of these at an upcoming meeting like Dallas, Texas Support Group leader
Stu Berwick (see Leader Words on right); there are dozens of
presentations to choose from:
• Consider showing your group one of these like “PIM-1: A New
Hope for the Diagnosis and Treatment of PH,” which introduces
groundbreaking new research. Take a look at PHA’s offerings on
the PHA Classroom page of the website:
www.PHAssociation.org/Classroom/Recordings
• The webinars focus on a range of topics from medical
information, to coping with PH in your daily life, to ways to get
involved with PHA.
• Ask members of your support group the topics they are interested
in learning about so you can choose the best webinar to watch.
• Consider having a nurse present to answer any questions that
come up after watching the presentation.
PHA PHA PHA PHA MMMMovies and ovies and ovies and ovies and DDDDiscussioniscussioniscussioniscussion
PHA has produced a number of educational and PH-related videos, which can serve as an excellent
starting point for a PH “Discussion Night.” We offer these DVDs on our website; take a look at the list on
the “PHA Store” online (www.PHAssociation.org/Store) and feel free to request any titles that interest
you. Remember, mailing materials can take time, so make sure to make your request at least 10 days
prior to the meeting. Consider requesting a movie now, just in case plans for an upcoming meeting
change. Email us if you can’t afford the $10 cost of the DVDs: [email protected]
Screening these videos at meetings can also give your group a central discussion point. Come prepared
with some questions to prompt discussion, and see where it goes from there. Remember to use open-
ended questions that invite varied responses. Consider questions like:
• What parts of the film came as a surprise to you?
• What made you the most hopeful when watching the film?
We suggest showing one of the free inspirational videos that PHA has to offer. You can ask for
copies of:
• “Path to a Cure,” which documents several PH medical professionals’ climb of Mount
Kilimanjaro to raise PH awareness.
• “Determination in the Delta: Meeting the Challenge of Pulmonary Hypertension,”
about a PH patient’s swim across the Mississippi river. These are both very upbeat videos and
provide inspiration if members of your group are interested in awareness efforts. Request
copies by emailing [email protected] .
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“When we had our ‘Laughter is
the Best Medicine’ meeting I
asked everyone to either bring
a funny story and/or a good
joke to share during our ‘Check
In’ portion of our
meeting. Then, instead of a
speaker, we watched two short
"Three Stooges" movies that I
had rented from Netflix.”
-Charlotte McCabe, SGL
Puyallup, Washington
Leader Leader Leader Leader WordsWordsWordsWords
• Apples to Apples
• Taboo
• Pictionary
• Scattergories
• Charades
Fun GamesFun GamesFun GamesFun Games
• Little Rascals
• Patch Adams
• Cheaper by the Dozen
• The Princess Bride
• Toy Story
FunFunFunFun MoviesMoviesMoviesMovies
Comedy or Comedy or Comedy or Comedy or GGGGame ame ame ame NNNNightightightight
Have you had a lot of medical speakers doing presentations lately?
Sometimes the pace of medically oriented support group meetings
makes it difficult for members to interact and get to know one
another.
Have a fun movie or game night so everyone can socialize! It’s
always easier to go to a meeting when you know you have friends
there, so maybe it’s time to take a break in your busy meeting
schedule to have fun as a group. It’s especially good for new
patients to have the social bonding that comes with fun, non-
medically themed meetings.
Depending on the size of your group, you might want to bring
several different options for games. Board games can be fun, as
well as games that can accommodate any number of players, like
charades. Ask members to bring a favorite game to share, or
discuss possible games at an earlier meeting. Take a look at our list
of fun games that accommodate many players; ask members if
they have them and would like to explain the rules!
Don’t forget the power of laughter! Laughing is healthy, it lightens the
atmosphere, and it brings people together. For a “Comedy Night,” like the
Puyallup, Wash., group enjoyed, consider watching some lighthearted (and
G or PG rated) movies at a meeting. If you don’t want to spend the whole
meeting watching a movie, consider watching some short films or comedy
sketches.
• Apples to Apples
• Apples to Apples
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PH TriviaPH TriviaPH TriviaPH Trivia
Just because a meeting is fun, doesn’t mean it can’t be educational too! Use your Survival Guide to come
up with PH-related trivia questions. These questions can be used for a fun and informative game. If you
have a small group, dust off your Trivial Pursuit board and use PH questions instead of the ones that are
provided with the game. If you have a bigger group, you can make a special board like the one below for
the questions, and play PH Jeopardy! Here’s a free website that helps you create your own Jeopardy
board: www.jeopardylabs.com. We’ve included some sample questions in the “Additional Resources”
section on page 22.
This game board was created by South Riverside County, CA Support Group Leader, Alex Flipse, for one
of her recent meetings. Mack McCarthy, leader of the Valley of the Sun, Ariz., group didn’t make this a
focus, but integrated PH Jeopardy as a fun activity during a meeting with much success!
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Here is a tip... make the Here is a tip... make the Here is a tip... make the Here is a tip... make the group as litgroup as litgroup as litgroup as little as you can tle as you can tle as you can tle as you can about yourself, and as about yourself, and as about yourself, and as about yourself, and as much as you can about much as you can about much as you can about much as you can about everyone else.everyone else.everyone else.everyone else.
-Doug Taylor
Midlands, South Carolina
PH Support Group Leader
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Speaker Suggestions
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LongLongLongLong----term term term term SSSSurvivors as urvivors as urvivors as urvivors as SSSSpeakerspeakerspeakerspeakers
Although most of these suggestions are for meetings in which you do not have a speaker, having a long-
term survivor speak can work well with little notice. This is a good meeting idea to prepare in advance in
case other meeting plans fall through. You can have someone in your group who has had PH for 8+ years
tell their story, answer questions and give tips to your group.
Many people who come to support group meetings are newly diagnosed patients who do not know
what their life will be like. Having a patient who was diagnosed at least eight years ago, when there
were fewer treatment options available, can be inspirational and comforting to those who are dealing
with fear and uncertainty. These long-term survivors were often told that they had only months to live
but have beat the odds and found ways to adjust and thrive. If this is a meeting idea that interests you
but you don’t know of a long-term patient, contact the PHA Volunteer Services team and we can help
put you in touch with someone: [email protected]
Dorothy Olson was diagnosed with PH in
the 1980s. You and your group can gain so
much from the inspiring story of those who
have beaten the odds and thrived, even
with this disease.
Twenty years ago I was
told I had six months to
live, but now there are
new things being
developed all the time.
The people who are being
diagnosed now have a
future to look forward
to.”
-Dorothy Olson
PHA Co-Founder
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“We liked having another leader at our
meeting. She knows so much and having a
new face made the meeting more special.”
-Linda Milo, SGL Port Charlotte, Florida
Leader Leader Leader Leader WordsWordsWordsWords
Leader as speakerLeader as speakerLeader as speakerLeader as speaker
As the support group leader, you could be the perfect speaker for your meeting! There is so much going
on in the PH community at any given time, and you might be just the person to point members toward
more ways they can become involved. Use this as an opportunity to show members what they can do
outside of attending regular support group meetings. Remember how you were feeling when you first
got your diagnosis, and understand that many of your members may still be in that place. You can tell
them some of the things that get you through the day as someone with PH, and report back on what
others are doing. Some ideas:
Being the speaker at your support meeting doesn’t mean that the meeting needs to be all about you. In
fact, it’s wise to make sure that you don’t only focus the entirety of your meeting on telling your own
story. If you are going to do most of the speaking at an upcoming meeting, select a topic such “Updates
from PHA” or “Ways to Get Involved.” You can also share your story, but be sure to allow time for others
to share and interact.
Another way to have a leader as speaker is
to invite a nearby leader of a different
support group to your meeting as a guest.
They can speak about their PH story, talk
about some of the achievements of their
own group, or even discuss projects that
your groups may want to work on
together.
National Updates from PHA:
Every month we send out an email
newsletter to all support group
leaders with updates from PHA’s
national office. We count on support
group leaders to get these messages
out. Mention important updates at
your meetings, and even think about
using these updates to give a larger
talk on the campaigns members can
get involved with, such as special
events or advocacy.
Stories in the News:
Individuals living with PH have
secured some great stories in local
and national news outlets. Print
out some of these stories and bring
them to your meeting for members
to discuss. Remind members to
keep their eyes out for mentions of
PH in the news. Who knows, this
may inspire someone in your group
to get another story written about
living with PH!
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This was one of our best meetings, indicated by the fact that people stayed to chat long after the formal part was over.
-Joan Stevenson Lehigh Poconos, Pennsylvania Support Group Leader
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Sample Agendas
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1. Welcome!
2. Housekeeping
3. Confidentiality Statement
4. Announcements
5. Introductions
6. Break into groups of 6 to share
your stories
7. Come back together as a group to
share highlights of the experience
8. Wrap up
9. Reminder of next meeting
Sharing Your StoriesSharing Your StoriesSharing Your StoriesSharing Your Stories
1. Welcome!
2. Housekeeping
3. Confidentiality Statement
4. Announcements
5. Introductions
6. Long-term patient speaker (make
sure to introduce them)
7. Q&A
8. Wrap up
9. Reminder of next meeting
LongLongLongLong----term PH Patientterm PH Patientterm PH Patientterm PH Patient
1. Welcome!
2. Housekeeping
3. Introductions
4. Voting on which movie to watch
5. Watch movie
6. Discussion time, share thoughts
after watching the movie
7. Wrap up
8. Reminder of next meeting
Movie NightMovie NightMovie NightMovie Night
1. Welcome!
2. Introductions
3. Housekeeping
4. Voting on which game or activity to
begin with
5. Explanation of game rules
6. Time for fun and games
7. Wrap up
8. Reminder of next meeting.
Trivia/GamTrivia/GamTrivia/GamTrivia/Game Nighte Nighte Nighte Night
Sample AgendasSample AgendasSample AgendasSample Agendas
It’s always smart to run an organized meeting. Here are some sample agendas you can use.
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It was good to see all the new patients
and old talking with each other about
their journey... All of the attendees
were very excited that they made it to
the support group meeting to get
answers and to see other patients
dealing with PH. Everyone had a great
time and they are looking forward to
our next meeting.
-Kevin Deeb, Burlington, Vermont
PH Support Group Leader
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Resources and
Further Research
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AdditionalAdditionalAdditionalAdditional ResourcesResourcesResourcesResources
1. For our Second Tuesday training in 2011, we discussed fun meetings without a speaker. Watch
our recording and hear suggestions from PHA and support group leaders about simple and easy
meeting ideas. http://bit.ly/SecondTuesFunMeetings
2. We have many useful PH-related DVDs that you can play for your meeting, just make sure that
you have a television or projector to use to play them. Here’s the link to the PHA Store. Take a
look! www.PHAssociation.org/Store
3. Looking for more ideas? Your fellow support group leaders are full of them, and willing to share.
• If you’re on Facebook you can join the Pulmonary Hypertension Support Group Leaders
group and join in on the conversations leaders are having with one another. Email us to
request to be a member: [email protected]
• Feel free to share ideas or pose questions on our Support Group Leader Yahoo
Group. Contact us to be added to this list.
4. Interested in playing PH Trivia at an upcoming meeting? Here are some sample questions to get
you started. Look through your Survival Guide for even more ideas.
• In 2010, where did PHA hold their International Conference? (A: California)
• True or False? COPD is a condition associated to PH. (A: True)
• A cardiologist is the doctor who specializes in your heart, what is the name of a doctor who
specializes in your lungs? (A: Pulmonologist)
• True or False? Right heart catheterization is the only test that can confirm a definite
diagnosis of PH? (A: True)
• Name one of the main symptoms of PH. (A: Shortness of breath, feeling tired, dizziness,
fainting, swollen ankles and legs, chest pain)
• How many minutes is the walking test that most healthcare providers use to assess the
exercise ability of patients? (A: 6 minutes)
• The right side of the heart pumps blood through the pulmonary artery to which part of the
body? (A: Lungs)
• Before a drug goes on the market it has to be researched and studied. What is the name of
the Government office that approves or denies new treatments? (A: Food and Drug
Administration)
• Which of the following is a word for breathlessness? A. dyspnea B. Eczema C. Vertigo D.
Psoriasis (A: A. dyspnea)
• True or False? In PAH, the right side of the heart tends to become smaller than normal. (A:
False)
Trivia!Trivia!Trivia!Trivia! QuestionsQuestionsQuestionsQuestions
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Phone: 301-565-3004 • Fax: 301-565-3994 Patient-to-Patient Support Line:
800-748-7274 www.PHAssociation.org