Spread the Word

Thank you for participating in Parkinson's Awareness Month 2011. While April has come to a close, raising awareness can be done all year long. Let others know about Parkinson's Awareness Month and that this disease affects an estimated seven to 10 million people worldwide.

Here are a few strategies to help you get started:

• Awareness Profile: Spread the Word
• Focus the Media on Parkinson's
• Send a Letter to the Editor
• Involve Public Officials
• Sign the Global Parkinson's Pledge
• Order the PD Awareness Month T-Shirt
• Display the Parkinson's Quilt in Your Community
• Partner with Your Local Library
• Spread the Word Online

Awareness Profile

How can you help spread the word about Parkinson’s? Here’s an example of how one woman made her voice heard in the community.

Arizona Mom Wins PDF’s Parkinson’s Awareness Month T-Shirt Contest

In 2010, PDF launched its first Parkinson’s Awareness Month T-Shirt Design Contest, which challenged members of the Parkinson’s community to design a t-shirt incorporating the Parkinson’s tulip and PDF’s trademark colors, yellow and green. The winning design would be distributed by PDF at the Parkinson’s Unity Walk in New York City in April and offered exclusively through PDF’s online store.

Heather Hinrichsen, a 36-year old mom who lives with young onset Parkinson’s disease, decided to give it a try. Her entry — the Fight to Win design — received over 800 of the 1,900 votes, quickly jumping to the top of the list and beating out four other finalists. Ms. Hinrichsen said “I hope that by sharing my story, people will realize that Parkinson’s is not just an older person’s disease. It can strike younger people. Through the t-shirt, I want to spread the message to everyone to fight PD. I plan to fight until I win — I have PD, but it doesn't have me.”

Focus the Media on PD

April is Parkinson’s Awareness Month! A media outreach campaign can help raise visibility of PD in your community and around the country. The key to media outreach is starting early. The following tips will guide you through your media outreach.

Tell Your Story

Perhaps you have been living with Parkinson’s for years and want to spread awareness. Maybe you have a loved one living with PD and raised funds through an event in their honor or you are an artist who finds therapeutic benefit from your artwork. Either way, no one can tell your story about Parkinson’s better than you. Start jotting down ideas about what you’d like to communicate. No matter what your story, it is important to include facts too. Statistics (for instance, the fact that nearly one million Americans are living with PD) will help others to understand your story in context. (See Awareness Tools for statistics).

Build a Media List

• Research a list of local reporters.
• Start with the media outlets with which you are already familiar — your local newspapers, radio stations and news stations (many contacts can be found by doing a simple Internet search or by calling the main number of the publication/outlet).
• Which reporters would be most receptive to your story? Consider a reporter’s “beat.” Often for local papers, it is the community news, community health or science reporters who may be most interested. Record each potential reporter’s name and contact information. If there is more than one editor for each beat listed, it is okay to initially reach out to all of them.
• Contact reporters in advance with a phone call or pitch letter to introduce yourself.
• Follow up! Many reporters are overwhelmed with stories irrelevant to their beat. It’s important to send your information to the right person and follow up to ensure that they have seen your release.

Write a Press Release 

A press release is a tool that will enable you to share your story. It should be personal and interesting while also relevant to the broader community. Keep it short and include facts about your work or event – who, what, where, when, why and how. If you know that your event will be a large community event or include a moving personal story, highlight that. A sample press release is included within our Awareness Tools.  Using this template, you can insert your own story and facts. 

Send the Press Release to Your Media List

• The easiest way to communicate with the media is through email, although some do prefer calls.
• In the subject heading of your email, include a phrase that is concise and eye-catching (i.e., Local Resident Aims to Raise $5,000 for Parkinson’s Research).
• Keep your email short; include an introduction and state your purpose for writing.  Tell the reporter that your press release is included in the email and then copy/paste it within the actual text of the email. Do not send the release as an attachment. Attachments are often marked as spam and so your email will never reach the editor’s inbox.
• If you have to/prefer to call first:
  • Devise a list of talking points before calling, much like those you would have said if you initially emailed your release. Reporters may not have much time to chat.
  • Utilize the “elevator pitch” method. This means that you have about 30 – 90 seconds to get your contact interested in wanting to hear more. If the person is interested, he or she will also ask for a follow-up email and this is where you should include more details of your event as well as your sample press release.

Follow-Up

• Follow-up is one of the most important tasks after reaching out to your targeted media list. Reporters are used to follow-up, so do not be afraid to call many times. Follow-up emails are also helpful — state that you wanted to make sure they received your previous email and re-state why you contacted them initially.
• Follow instructions!  If you receive a voicemail asking you not to leave a message regarding pitch emails, then do not, but continue to call. 
• When calling, be prepared and polite. 
• If you have received confirmation of receipt of your email, ask if there is anything else that you can provide for the reporter. If he or she is receptive, ask if the reporter would be interested in writing about your event or Parkinson’s Awareness Month in general. For instance if you are working on a proclamation locally (see next section), provide a copy for the reporter.
• If a reporter seems as if he or she needs more convincing, tell him or her that you have a media kit prepared with more information (see suggestions below). We have provided samples for material you may want to place in your media kit.

Develop a Media Kit

• Press release (See a template)
• Parkinson’s disease fact sheet (Download PDF's Fact Sheet)
• Proclamation from the President, your governor/mayor (See a Sample Proclamation)
• Flyer or promotional information for your event, if applicable

Suggested Media Outlets

• Health producers at local news station
• Radio stations
• Community or health editors at local newspaper
• Web staff at local newspapers or broadcast outlets
• Hospital medical newsletters
• Online bulletin boards
• Calendar of events for your neighborhood

Sample Media Schedule

February and March

• Select your targeted media outlets.
• Find the specific contacts for each outlet that you will reach out to.
• Fill in the personalized material on the sample press release.
• Develop your talking points for the phone and your selling points for the pitch email.
• Draft your email so it is ready to go by the end of March (or before if your event is early in the month).*
•  Send out your press release.*

* If your event will be held in early April, readjust the timeline to maximize the time you have to get media coverage.

April

• Send follow-up emails and make follow-up calls to reporters.
• Continue to be persistent and follow up again.
• Once you have set up coverage for your event, confirm all details.
• After the event has been covered, send thank you notes to the reporters who
  worked with you to get your story heard.

Send a Letter to the Editor

Sending a simple letter to your local paper can be a wonderful way to alert your community about Parkinson's Awareness Month. What should you include? It may be helpful to write about your personal connection to Parkinson's (whether it is you or a loved one), details about your events or efforts to raise awareness and a direct invitation to community members to participate in any local activities. See a sample letter below.

See Sample Letter to the Editor

Involve Public Officials

Public officials — mayors, governors, state legislators and their spouses — can help to make Parkinson’s Awareness Month a newsworthy event. Receiving a proclamation from a mayor or governor serves the purpose of increasing awareness about Parkinson’s disease and the continued need for research for better treatments and a cure.

For more information on partnering with political representatives, contact the Parkinson’s Action Network (PAN) at (800) 850-4726 or www.parkinsonsaction.org.

Tips for Passing the Word to Public Officials

• Allow plenty of lead time. Getting a proclamation approved and signed can be a lengthy process. Plan to make frequent follow-up phone calls.
• Coordinate with others in the community. Has your state or community had a proclamation signed in past years? Who is handling it this year? To find out and ensure you can work together with other advocates already requesting a proclamation or interested in joining you, contact PAN at (800) 850-4726.
• You are more likely to get attention for your request for a public official’s involvement if you invite other local Parkinson’s organizations and prominent individuals to join you in submitting the request.
• Send your request on the letterhead of one lead organization and include the signatures of all other coalition members. Choose one person to represent the group in the cover letter.
• If you are requesting that a public official sign a proclamation, include a copy of it
  with your letter.
• If you are requesting that a public official participate in a Parkinson’s Awareness Month event, include the date, time, location and a brief description in your letter.
• Also note the names of any other invited public officials, any sponsors of the event, a general description of the audience and the role you would like the person to play.
• Contact information for city and state officials can be found in your local telephone directory. If you wish to invite an official’s spouse, call the official’s office and ask for the name and address of the staff person who handles the spouse’s correspondence and scheduling.
• Publicize your efforts (See Media Tips above).

Sign the Global Parkinson’s Pledge

You can support the global effort to fight Parkinson's disease (PD) today … by simply signing your name to the new Global Parkinson’s Pledge. The pledge was announced at the 2nd World Parkinson Congress in September 2010 in Glasgow, Scotland. The community has created this pledge to work for increased awareness of Parkinson's, new treatments and a cure. The World Parkinson Congress seeks to have one million signatures on the pledge by the next meeting in 2013.

Can you help them meet their goal?

Sign your name today at www.parkinsonspledge.org.

Order the Parkinson’s Awareness Month T-Shirt

PDF is hosting its second Parkinson’s Awareness Month T-Shirt Contest! Last year, the winning design — Fight to Win — was worn by hundreds of people throughout the US (see story above).

A committee of judges from PDF's Creativity and Parkinson’s Project and People with Parkinson’s Advisory Council recently chose five finalists designs and the general public will vote for their favorite. The results will be announced in March 2011, and the winning design will be available exclusively at PDF’s online store and distributed at the PDF booth to participants of the Parkinson’s Unity Walk in New York City.

Votes have now been tallied and our t-shirt winner will soon be announced! Stay tuned to www.pdf.org and www.pdf.org/shop for ordering information.

Bring the Parkinson's Quilt to Your Community

What’s a powerful way to show the impact of Parkinson’s? Bring the Parkinson’s Quilt to your neighborhood! PDF’s Parkinson’s Quilt is the first global quilt to focus the world’s attention on Parkinson’s disease, aiming to raise awareness of the impact that the disease has on individuals living with it and on the community's urgency to find a cure.

Each of the more than 600 quilt panels was made by a person living with or affected by Parkinson’s disease. The quilt was displayed for the first time at the 2nd World Parkinson Congress in Glasgow, Scotland in September 2010. Sections of the quilt are now available for rental by individuals, nonprofit organizations, corporations and other institutions for a modest fee. A section of the Parkinson’s Quilt can be the perfect centerpiece for an awareness or fundraising event for support groups, in academic settings, or at libraries and the workplace.

Because April is Parkinson’s Awareness month, the quilt will be in high demand at this time! If you are interested in renting a section of the quilt this April, please send in your application as soon as possible. To learn more about renting and displaying the quilt, or to view the sections online. 

Rent the Quilt

Partner with Your Local Library

Libraries all over the US are participating in Parkinson’s Awareness Month. Are you connected to your local library? Contact us to participate and run these ideas past your local library.

With Whom Should You Speak?

Your contact will vary, depending on how your library works. Some libraries utilize their volunteer committees to handle new events. Others will point you towards a specific staff person or the library director.

Types of Events

• Create a Parkinson’s display in the library. Many libraries have an area they use for these sorts of activities. Offer PDF or other educational materials so that those visiting the library can learn more about Parkinson’s.
• Use the display to advertise any other fundraising or awareness-raising events in your
  neighborhood.
• Partner with other groups active with the library to host an educational event or build Parkinson’s into one of their events. For instance, many libraries have health-related groups that put on educational events each month. They may be open to focusing their April event on Parkinson’s!
• Publicize your event in library newsletters, flyers, websites and bulletin boards.
• Plan a book fair with a health theme. Invite local expert speakers to provide “mini seminars” on Parkinson’s and related topics at the library throughout the day.

Spread the Word Online

• Dedicate your Facebook status to raise awareness about Parkinson’s during April.
• Send personalized eCards from the PDF website to your friends and family to encourage them to join the fight to find the cure (coming soon!)
• Become a Fan of PDF’s page or Join our Cause on Facebook!
• If you have a birthday that falls in April, set up the option for your Facebook friends to donate to a Parkinson’s organization for your birthday.
• Publicize your event!  Submit details about your event at www.pdf.org/en/event_calendar and it could be published on PDF’s website.

Connect with PDF

Get the latest scientific updates, news about PDF’s educational materials and events, and connect with others in the Parkinson’s community

• Blogger: www.pdf.org/blog
• Facebook: www.pdf.org/facebook
• Twitter: www.pdf.org/twitter
• You Tube: www.pdf.org/youtube
• Flickr: www.pdf.org/flickr

Next: Educate Yourself & Others