Newsletters and Bulletins

Newsletters and bulletins are likely to be the first materials an advocacy organization creates. Outside of physical meetings, newsletters are one of the simplest ways to share information with members and to provide a place for members to share their stories with each other.

When creating a newsletter, consider the needs of your members first and foremost. Devise a mix of pieces ”some long, some short to make it easy to read and useful as a reference. A good mix might be a longer article that features an event or reports on news relevant to the group, and a number of shorter columns that appear regularly. A PKU newsletter, for example, might have a feature article about new legislation along with several columns that appear in every issue: a new personal story, a "research corner" with regular updates, and a PKU diet-specific recipe.

When creating email newsletters, the same general structure applies, but there are some different formatting issues. An email newsletter should be very short and simple, and the best ones give a brief teaser with a link back to your website, where the full article can be read. You remind your newsletter recipients that the site is there and updated using brief information. Then you bring them to a setting (the website) where you can present information in any depth with a friendlier interface than may be readable in every user's email reader.

It is very important to print pictures of your members enthusiastically participating in the organization's activities. Through the pictures, you can demonstrate the diversity in your organization and its partnership with professionals.

Your newsletters should be regular enough to keep your audience aware of you, but not so frequent that readers get tired of receiving it. You may send your newsletter monthly, especially if your audience includes families with young children who must learn about compliance with treatment plans. The newsletter may include activities for those children to help support parents. On the other hand, you may only send your newsletter annually or quarterly for major announcements, or in advance of large annual events such as holiday fundraisers.

You may find it useful to occasionally send time-value information separately from the newsletter, especially if your newsletter is sent less frequently. For example, there may be an opportunity to contact congressional representatives about appropriations or legal protections. Or, there may be an important research announcement about which you want to inform your readers, while your organization prepares more in-depth materials. This is a great way to rush time-value information to your audience, but if you find yourself doing this regularly, you may need to revisit your newsletter schedule.

If your mailing is large (generally over 200 pieces or 50lbs), then you can apply for a nonprofit bulk mailing permit from the US Postal Service (USPS). They will give you an indication, a permit number ”to put on your mailings. The mailing must be sorted according to complex USPS guidelines. As these guidelines become more complex and your mailing includes more of the country, you may want to have a mailing house or sheltered workshop prepare your mailing.

Calendars

An advocacy organization should not feel limited to using only newsletters and bulletins. Using creativity with other formats may be beneficial.

Christy Collins

M-CM Network

“We make calendars and we send them to physicians, but this mostly gets pictures of our kids in front of geneticists and some other doctors that already have some familiarity. I find this to be a really handy hack for getting these doctors more familiar with the physical characteristics of our patients across different ages, and also I hope it helps researchers to be more interested in them as human beings as opposed to subjects. We don’t charge for placement, but we have a very small patient community.

Last year we had about four pictures per page. We make them through Lulu, so they are print on demand, and since we have no overhead, we don’t have to do a lot of shipping and fulfillment work. I do have to do the page layouts manually because the number of images that we want to fit per page exceeds the pre-made layouts. This is a fair amount of work and I keep thinking I should find a volunteer to do it, but it is about the most enjoyable thing that I do, so I haven’t given it up yet. We put a submission form on our website in the summer and close it in early September. The form includes a consent checkbox and we let people choose to consent for just the calendar or for any purpose. This is handy because then we always have fresh photos if we need them for marketing materials from the people who have consented for any purpose.”

Print versus Electronic Newsletters

With the increasing cost of printing and mailing newsletters, many organizations are considering only offering an electronic newsletter. Here are some things to think about:

Print Newsletters

• Our newsletter is sent 2 times a year (June and December), to 650 people in 3 languages (French, English or Spanish, depending on their country) and it is totally "homemade" (writing, printing, folding, stamping, mailing, etc). Up to last year we only mailed it. We could afford it because of the huge voluntary work put it! It was on specific pages on our website (htm). Receiving our newsletter is totally free, whether for sufferers/families or doctors, members, donors, medias. We had decided that, especially for families and sufferers, financial means should not prevent them from receiving information. We can do it because of the small number of sufferers worldwide (145 as of today and we are the only organization dedicated to Cutis laxa worldwide!). The other reason is that one of our main aims is to inform on CL and get it known as widely as possible.

• Angioma Alliance mails out 600 copies of our 12-page newsletter 4 times a year to US residents only. It's free of charge. We don't use a mailing house at this point - the newsletter is black/white and is stuffed into envelopes and sorted by volunteers for bulk mailing. With postage expenses it typically costs us about $1 per newsletter. For us, the newsletter is a vehicle for reaching donors so, in essence, it has never cost us money to produce. We put a donation return envelope in each newsletter and send the newsletter only to people who have had some kind of financial relationship with us in the past - through direct donations, product purchases, conference fees, etc. - and so, we feel, are more likely to contribute again. Often, the newsletter is being mailed to friends/extended family of affected individuals rather than to members themselves. These are people who care, but who wouldn't typically sign up for our online mailing list. We review the mailing list every year and remove people who have not donated within the last 24-30 months. We also put a copy of the newsletter in pdf form on the website and announce it via an email to our online mailing list (free through Bravenet - folks sign themselves up) and provide just a link.

• IDEAS still mails out newsletters to all our member families in the U.S. and Canada, and those international families who don't "opt out" to reading the online version. We have invested some time and energy into asking our international families if they would be willing to read online, in order to save costs because international mailings are where costs really add up. Many of them have been happy to opt out of mailed newsletters. Our board shares the opinion that asking members to read online adds a small inconvenience and probably has a chilling effect on how many really read it. It is certainly my experience that I read newsletters that come in the mail at a much higher rate than I do electronic newsletters. The other thing we have found is that the printed newsletters are being shared with extended family, therapists, doctors, etc. who really need information about chromosome 15q duplication syndrome. We believe these secondary audiences are not as likely to follow links as they are to read a newsletter that is handed to them by a family.

Electronic Newsletters

• As of our last mailing, we no longer print our newsletter for the general public and now only offer it online. We gave a "going green" theme. It's a smaller newsletter (now 12 instead of 24 pages), but we produce it 4 timesa year instead of 3. We still print a small number, to be kept in our own paper archive and for sponsor packets. When a new newsletter is completed, we email our membership, announcing it with a link to our website. That accomplishes 2 goals - it does not clog up our membership's inbox and it drives people back to our website. PDF is the best way for people to be able to print your newsletter online. We also convert it to HTML so that it is easier to access online and full articles remain intact (without having to jump to another page).

• We send our newsletter out quarterly (Feb, May, Aug, Nov) to our paid members. It is delivered in a PDF and we put the archives on a password protected site for our members. We let our members know about it through an email and we use graphicmail.com As a nonprofit, we were able to get the program for free and are able to send out 5000 emails before we have to pay for anything. In the early years, we did print it and mail it, but found that it was much more cost efficient to make an electronic version.

• We eblast (send an email to a large mailing list) an announcement from our Salesforce database that includes a link directly to the PDF of the newsletter, which is posted on our website. It works well. It’s a brief email that highlights news/features, so hopefully it's small enough to get through but intriguing enough that people will click on the link.

• We eblast the link to all members of our collaborative with an announcement that our family newsletter is online. It is posted on our website along with back issues. I create it in Apple Pages (an Apple iWork product similar to Microsoft Word), then save it as a PDF and upload it to our site. It brings people to the website, which is nice as well!

Offering Both Print & Electronic Versions

• We produce a newsletter 3 times a year, about half of our "members" get them mailed hard-copy, the other half electronically. They indicate their preference when they register with us. We post the newsletter on our website for anyone to download. "Emailing" the newsletter to our e-recipients consists actually of a brief email with teasers to lead articles and a link to where it is posted on our website.

• For families who do not have internet connections at home, we do have the newsletters available in archived format on our site and in most towns you can get an internet connection at a library or cyber cafe. So, for those who do not have internet connection, this is what we suggest to them. The other option, if you want to stay in print, is to make a deal with your printing company. Tell them you will place their advertisement in your newsletter for a break in printing. Or, you can try a company like Gotprint.com and see if their rates are better.

Donor Names

Donor names are often included in newsletters, whether print or electronic. However, providing this information online has led to privacy issues for some organizations. There are a few different ways to combat such problems:

• Only include donor names in the print version of the newsletter. By removing information about donors from electronic newsletters, people’s names will not show up on search engines.
• Instead of listing donor names, list only memorial or honorary names online. Allow donors to indicate if they wish to note their donations as either honorary or in memory, and if they do not, do not list any name.
• Provide an option for donors to request to remain anonymous.
• Some organizations list only honorary and memorial names online, and instead list donors in their annual report. Again, in this case there should be an option to opt-out of being included in this report.

Internal Links

• Articles, Letters, and Other Media for Lay Publication
• Brochures and Fact Sheets
• Clinician- and Researcher-Focused Materials
• Family Health History
• Press Kits
• Publisher Recommendations
• Starting Points for Planning Materials