Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

August 2004

BACK FROM THE IAL                                                                                               
by Pat Sanders


The IAL this year in Anaheim had a beautiful setting for the meetings, dinners, and social activities. An outdoor patio section of the restaurant was full most of the time.  The weather was superb and for those of us who are living through a soggy, hot, summer, it was delightful to be able to be outdoors in the cool and dry weather.


The meeting rooms were arranged very well and the vendor’s area was spacious with plenty of room to visit and check out products, have coffee, or look over the IAL Auxiliary sales tables. 


For me, the highpoint of every IAL is the opportunity to see and visit with old friends and to meet and make new ones. Right up there with the friendship aspect is the opportunity to learn through the Voice Institute, the speakers at the Annual Meeting, the Vendors and other laryngectomees.


The numbers were down again as they were last year in Atlanta.  It is hard to find the clue that says, “This is what we can do to get more people to attend” but it is a shame to put on such fine programs every year and have fewer and fewer show up for them.  The next two years have been set for Boston, MA and Biloxi, MS.  Since WebWhispers is planning to sponsor a cruise after each of these, perhaps the incentive will be there to go to both while one airfare will get you to both activities.


An added attraction in Anaheim was a spectacular display of fireworks every night at 9:25 from Disney and they could be seen beautifully from the hotel.


I was a speaker at one of the programs for the Annual Meeting and my topic was Newsletters for those who want to start one, want ideas for an existing one, or would like to change the distribution process.  This was a Power Point presentation, which I cannot give here, but I promised to put my notes that I used in here for those who want to be reminded of certain points.  Remember, these are notes, not an article and some of the notes were just to remind me of a story to tell or a slide to comment on.  They take up the rest of this newsletter but every newsletter started is that much more contact we have.




Notes used for the talk at the 2004 IAL in Anaheim


Why should you publish a club newsletter?


Bring Group Together

Encourage them to come to the meetings

Make them feel like a group.  When people receive a newsletter every month, they start to feel a part of the group by sharing and having them share their stories and ideas so they get to know each other individually.  When they see Joe Smith’s name several times and then see him at a meeting, it is more like greeting an old friend.


Build Membership

Add to the Mailing list. Have all of your members watch for new people to add to the mailing list.  The more you reach…the more you will reach. It’s like the throwing the pebble in the pond…the ripples keep expanding the coverage.  If the members call on someone in the hospital, meet another lary in the grocery store, Have them extend a meeting invitation.  If they are willing to give you a mailing address, get them on your mailing list. Ask the members to carry a copy of the newsletter and hand it out.  Leave some with the SLP or ENT.


Inform your membership

When and where meetings are held (constant reminders)

Special visitors expected

Speaker and/or topic of discussion if you have one selected.

Tell about National or Regional meetings.  Encourage attendance at these.

Make arrangements to go to some of these meetings together.

Tell about ACS and other local Cancer Support Meetings



Make everyone more aware of the world of laryngectomees and our needs

Help with rehabilitation. Help from those who have been there.

Exchange ideas from practical experience.  Lary to lary.

Latest news of new products or improvements




How do you get the newsletter out to the people?   Methods of distribution


Snail Mail

Snail Mail – up until 10 years ago, this was about it. The US Post Office was the only way.  You may have had some members then who were playing around with a computer, but there wasn’t much on line to find. Number of pages is important if you are snail mailing because of the postage. Print on both sides of the paper? Or fold and address. If you send the same number of pages each time, everyone gets used to it and people like the familiar. 


Don’t send everything you have collected in 8 pages one time and two the next.  If you shorten it, they will feel cheated that month. If you have a lot of material (what a delightful dilemma!) save something to start next month’s issue



You may want to change the format to send it out email because most of your members are on email now. Email newsletters are called E-Newsletter or E-zine for E - magazine. These days you can start a newsletter with nothing but a computer and a mailing list. Lots of people are starting to send email reminders to come to the meeting which is only one step from being a newsletter. You can send an email containing a meeting notice and a report on one of your members.  Add an article or a note and it becomes a newsletter. It doesn’t even have to have a format. A not-very well put together newsletter is better than no newsletter at all. At least it keeps you in touch and, thus, serves one of the main purposes.  You get better as you try.


First, of course, you have to determine how many of your members have email. It may surprise you how many have access now.  Another choice is to have a web based newsletter.


On the Web

If you have a web site, you might use it to post your printed edition to keep for a while or forever if you have enough space!  You can also just publish a web newsletter if you have enough members who can get to it.  This will be a popular thing later, but it is just getting going now.  If, on your club’s home page, you provide general information about the club or support group, it’s purpose, and some contact information, then you do not need to include that same information in each newsletter issue you post on the web.


Put together all of the above.  For instance:

HeadLines is sent out snail mail. It then is put on the WebWhispers email list, the WWHealthhelp email list and the Larynx-C list before it goes on the Web. It is on the IAL site, the WW site and a laryngectomy site in the UK.  Copies of articles in it are often used by other snail mail laryngectomee newsletters.


WOTW is a newsletter published on the web. But we have added an E-Zine version which contains one article or excerpts from several articles and is put on the lists to encourage or remind those who haven’t been to the web to read it, that it is there on the web site and so are past issues. There is no snail mail version! Printed out from the Web, it is 15 to 20 pages long.



What do you put in a newsletter?


Standard items

List of Officers with contact information (telephone, Email addresses) You may add the names of a doctor and SLP if you are group based at a clinic or hospital and have permission to use them.  This is the type of information a newcomer might need.


Meeting notices, changes of plans or dates. Parties or special event plans.  What is coming up next month.. 

List new members and perhaps tell a little about them



Minutes of last meeting (could report on attendance, guests, speaker). Financial Reports. Projects the group is working on ( trying to start a visitation committee or a loan closet). Other Business of the club


Report illness, hospitalization or death of a member, list Birthdays, anniversaries of the month

Reports on past special events. Last month’s meeting. A picnic.  Attending a Cancer Survivor’s Day.


Photos. If you are sending an email version…don’t send photos.  A list like WW won’t handle attachments and photos are attachments.  If you send photos in regular email, the people using older, smaller computers might not have the room to download…or perhaps mail station or some other methods of receiving email won’t be able to receive them.  You can have an email version and link to the web site where you have the photos on display. There is no cut and dried right way and there is nothing wrong with adding and changing as you go when you find out what is effective for your group.




You can make themes in different ways. Repetitive Features (Long articles that can be split into Parts 1, 2 or 3.Find a theme or set ideas for particular topics for a complete issue. (different views of or experience with the same subject).  People like to know what they are getting so they can look forward to it. A series of articles possibly written by different people but connecting. OR different topics by the same author.


What do readers like the most?  Success stories (Everyone loves success stories), stories that appeal emotionally).  Second to personal stories are technical articles about equipment, how to care for it or how to use it properly, advice from professionals.


Text and/or Photos


Let’s take a look at a story written by Roger Jordan for WotW (Bring up the slide of Roger’s story and after pointing out what we did with that.)  (Go to the slide of WotW Index. And show the different ways of having themes)

Remember!  If You Are Printing different editions, the Print and Online Editions may have photos that the Email version won’t support.  I usually write an article that stands alone with text and then, if we wish to add photos on the website, we can.


Where do you find material?


Copywork – Copyright?


Show two slides, one showing what WW has for copying/reprinting  for three different sections. The other a cancer site that has different rules for different people on copying. Talk about the various rules, with a number of them shown on the Canadian Lung site. Show part where you may make so many copies if you are non-profit.  It changes if you are ‘for’ profit.  Links if showing only a part of what is on the site.


You might want to copy an article or hint.  Again, be SURE to give proper credit. It is hurtful to an author who has sweated and slaved over writing something to have it well accepted and reprinted all over the place…and never have it mention his name.  It is stealing his work, ideas and creation.


You must look for the copyright on whatever information you care to write about or copy…Rules are different for each one.



All the information you ever wanted is on there and learning to search the Internet for specific information takes practice, imagination such as…What other word or words could I use to search for the right information? It takes a lot of time and patience.




Ideas that come to you through your own support group meeting, the speakers you have, a member’s suggestion or question or what you learn here at the IAL AM or VI might call for something that would fit your newsletter.



Ask your doctor, dentist, SLP, or other professional to write an article (a page, more or less) for you to educate the laryngectomee on something they need to know. Have a topic in mind when asked, What do you want me to write about? and your chances improve. If they shy away at the idea of an article…ask for a hint and write it down. You might ask what question or questions he has had to answer most frequently.


Newspapers and Magazines


Read or at least glance over your daily newspaper.  They might have something of interest to your group.  There may be an announcement that the local hospital is getting a new IMRT (Intensity Modulated Radiation Therapy) machine to change the way radiation is used in some cases.  You can report that in your newsletter.

Other Newsletters


Learn from others.  Look at other newsletters from any source and see if they have an idea that you are not using but might fit with your own publication. It might be a short bio on a different member every month..a joke corner or letters to the editor from other members.  Take whatever ideas you can to make your newsletter right for your group.


Who will write for you?


Literary Content


While I partially covered this topic that in the last segment, I’ll make it VERY clear, no one comes and begs to write for you.  You must ask people to contribute. Are they afraid they won’t know what to say? See if you or someone you know can edit for spelling and grammar. Every laryngectomee has a story to tell.  What each lived through, how their family reacted…each tale is different and yet, when people read them, they relate to all.


Stock up with short jokes, funny stories, tips, hints, news items.  It is wonderful to have these available when an article is ready and you have just enough blank page to fit one more thing in. It’s a lifesaver.


If you can have one real life story or  educational article, that may be enough for the lead, main or only article.  You might fill in with some of these:

Lists of informational books or web sites, Health advice, recipes (tell about the Massage and Stretching series), News on treatments and medications, Jokes, stories or inspirational pieces

The Back Page

The back page or the last page of a printed newsletter can be used to remind readers of upcoming events and this can be the standard place you put the lists of officers, notes asking for information or maybe a final joke to leave them with a laugh.  You may also use the back page or part of it for the address label if you are folding and stapling the newsletter instead of putting it in an envelope to mail.


What are Deadlines?


You have deadlines for getting material in. Deadline to be ready for printing.  Deadline to mail or send out.


Set a calendar for whatever you are planning and stick as closely to it as possible. Set a time to have the newsletter out. .  If it is a monthly newsletter, pick a day, like the 20th or the 7th to have it to your members. In snail mail, allow a week or 10 days for copying, mailing, and to arrive.  If you don’t have a large mailing list, the clinic, ACS, or possibly one of your members may copy them for you.  If someone is going to get an article to you, ask for it about two weeks before your Print deadline so you have time to edit, and contact the person again to ask questions or get another paragraph to add.  The earlier you can get your contributions, the better.


Don’t expect a lot of feedback but the people you send it to will be reading it.


Be creative. Use articles or ideas in more than one place. For instance, have an article in the newsletter and have that topic for discussion at the next meeting.  If you give a talk, make notes to use later.. Following my own suggestion, I will have a write up sharing the notes I made for this talk.  It will be in the August issue of HeadLines which will be available before the first of the month.







 HeadLines Newsletter:
 Pat Sanders pat@choralmusic.com

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, a monthly newsletter, and Humor.  Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support   In addition, there is a forum with message boards for social interaction.  This is the largest internet support group for laryngectomees and is a member club of the IAL

LISTSERV FOR LARYNX CANCER A listserv with exchange of e-mails relating to larynx cancer. http://listserv.acor.org/archives/larynx-c.html  to join or leave the list

A Laryngectomee site from the United Kingdom    http://www.laryngectomees.inuk.com  presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America. They have all HeadLines since 1997

The Official site of the International Association of Laryngectomees

http://www.larynxlink.com  has all of the current information on the IAL, plus many newsletters from all over the US (including HeadLines for the last two years).  Information is always available for the IAL Annual Meeting and Voice Institute held once a year.



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