Advice from the Pros
Pro Tip #2: There are simple ways to help others to learn about Parkinson’s and the need for research. "I contacted my local library network and I asked them to help me display Parkinson's educational pamphlets, and 22 libraries did! That is a positive drop in the bucket.”~Rosemary Sammons. During April 2013, PDF Research Advocate Rosemary Sammons of Westchester, IL, who lives with Parkinson’s, coordinated with 22 libraries in the Chicago area to create displays of PDF educational resources.
Who's PAIRing Up with a Library?
PDF Research Advocates across the US are partnering with their local libraries, banks or community centers this April to display materials for Parkinson's Awareness Month. See the list below to find a display near your community!
- Hernando, FL, Meg and Richard Hoffmann
- Westchester, IL, and 21 libraries near Chicago, IL, region, Rosemary Sammons
- Crest Hill, IL, three libraries in the region, Don Simmonds
- Noblesville, IN, Linda Hinkle
- Indianapolis, IN, Mary Yeaman
- Baton Rouge, LA, Carol Harrison
- Norwood, MA, Jed Hickson
- Saginaw, MI, Carolyn Weaver
- Bloomington, MN, Ruth Lotzer
- Jefferson City, MO, Judi Jecmen
- Sherrills Ford, NC, Patti Meese
- Rahway, NJ, Greg Hardoby
- Wappinger Falls, NY, Ken Chatlos and Nancy Redkey
- Memphis, TN, Mary Ann Kann
- Collierville, TN, Howard Patterson
- Olympia, WA, Tom Gorman
- Burlington, VT, Pete Adams
- Randolph, VT, Cassie Blanchard
Ensure that all people with Parkinson's have access to the latest information.
Here are a few ways to do it:
- Link with Your Local Library
- Make Parkinson’s Part of Health Fairs & Events
- Partner with Professionals
Each year, libraries around the US show their support of Parkinson’s awareness.
After all, public libraries are designed to bring communities the best information. Let’s use that to our advantage to help others learn about Parkinson’s.
What You Can Do
Option #1:Create a Parkinson’s Display
Libraries may already have an area they use for awareness activities, whether it is a special table, bookshelf or display case. Offer copies of PDF’s free educational materials, posters, and other relevant materials, so that library visitors can learn more about Parkinson’s.
Use the display to also inform visitors of nearby support group meetings or Parkinson’s-related events, by including flyers on the display.
Option #2: Plan a Parkinson’s Book Fair
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.
Option #3: Link up with Pre-existing Library Events/Groups
Many libraries have committees or health-related groups that host events each month. Ask to be part of their events, or to focus an April event on Parkinson’s.
How To Do It
- Reach out to your library to discuss the best options for raising awareness.
- Start with a phone call or an in-person visit.
- Begin by introducing yourself, and letting library staff know that you would like to find a way to work together to raise awareness of Parkinson’s.
- Keep in mind that 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.
- Once you find the right contact, suggest a small display table, ask about available space, and offer free materials from PDF (many libraries are understaffed, this saves them time and money!).
- Bring a copy of this toolkit, showing photos of other displays or PDF’s educational materials, so the library knows that your efforts are part of a larger national effort.
- The same rules apply as other awareness efforts: be persistent. Sometimes you may call the library and get the right person immediately, but other times it may take time (and a few phone calls or visit) to find the right person and the right concept that works for your library.
- Publicize your display or event in library newsletters, flyers, websites and bulletin boards (see more promotional tips).
- Say thank you. Libraries are typically happy to have help and suggestions from the community, but they often put a lot of work in too. Say thanks and keep in touch throughout the year, so you can build the relationship and work together to raise awareness in the future.
- Take photos of your display! Send them to your local newspaper to get additional press and share them with PDF via firstname.lastname@example.org or via a post on our Facebook page (www.pdf.org/facebook).
What You Can Do
Option #1: Display at an Existing Event
Many community and health organizations organize health fairs and events that link community members to health resources. There are many ways to bring your Parkinson’s message to this broader audience. For example, offer to host a Parkinson’s informational table, where you can provide materials from PDF.
Option #2: Organize an Educational Event
Organize your own event about Parkinson’s disease, for the public or your support group. Be creative in using free resources to build a group discussion, for example, view PDF’s free PD ExpertBriefings as a group or bring in a local guest speaker.
Option #3 Start a Support Group
Do you see a lack of resources or events in your community? Start a local support group. Find members by placing an ad or a calendar listing in the local paper. Ask the library, community center or local hospital or clinic if you can use their space, free of charge, to meet.
How To Do It
- Search for existing events and groups in the local paper or online. It might be more effective to call local agencies, for example, the town government, your local Area Agency on Aging, community center or senior center or health department.
- If there is a health fair taking place soon, ask to host an information table about Parkinson’s. Display free PDF materials and if relevant, your support group information. Talk to visitors about life with Parkinson’s.
- If you already have an existing Parkinson’s network or support group, work to find a free space, such as a room in the library or recreational center.
- Offer to help find event planners or guest speakers, such as doctors, people with Parkinson’s and nurses. Contact your local university or movement disorder center to find a neurologist specializing in movement disorders and invite them to speak. Contact PDF to inquire whether one of our Research Advocates is available. The nearly 230 members of this national advocacy network can speak about the latest research and nearby clinical trials. They may also be able to put you in touch with researchers or movement disorder specialists.
- Ask your support group to gather together for PDF’s annual April online seminar, “What’s in the Parkinson’s Pipeline?” Plan a discussion of the topic after the event with your members (see dates for upcoming PD ExpertBriefings).
- If your event or support group is new, send the listing and flyers to local papers, newsletters, websites and papers (see more promotional tips).
- Add a creative element to your event! Display the Parkinson’s Quilt and distribute the Creativity and Parkinson’s calendar, which features the inspiring works of 13 people with PD who find artwork therapeutic for their PD symptoms.
The dedicated health professionals who care for us – neurologists, physical therapists, speech language pathologists, nurses, occupational therapists or others – often share the goal of wanting to help others learn about the disease.
What You Can Do
Option #1: Share Your Story with Professionals
Talk to a group of professionals about life with Parkinson’s, whether it is hospital staff members, physical therapists or future professionals (for example, nursing students). PD is incredibly complex and our understanding of its symptoms has improved drastically in the last 10-15 years. Offer to answer any questions they have about your symptoms and let professionals know about PDF resources, such as continuing education opportunities.
Option #2: Help Professionals to Educate their Patients
Let professionals know that they can order PDF materials for free at anytime, to have on hand for their patients, or refer them to our National HelpLine
Option#3: Partner with Professionals to Educate the Public
Work with local professionals or clinics to create a Parkinson’s educational display during April or all year round. Include educational materials, the Creativity and Parkinson’s calendar or even the Parkinson’s Quilt.
How To Do It
- Contact health care educators, such as faculty at local medical or nursing schools or physical, occupational or speech therapy programs, to inquire about speaking to their students. They may allow a presentation from you in April, to highlight Parkinson’s Awareness Month or may recommend another time when their materials is covering neurology and Parkinson’s disease.
- Contact your local hospital, Parkinson’s clinic or movement disorder center and offer to give a short talk about your life with PD. Ask your own providers, perhaps your physical therapist, if you can give a talk to their entire practice one day.
- Pick a certain part of your own story, perhaps your diagnosis, or focus on explaining your symptoms. Discuss symptoms that are often misunderstood, such as the PD mask face, and spread the message that Parkinson’s is different for everyone.
- Ask for help in setting up a PD display similar to those listed in the library section. Often, hospitals and clinics place someone in charge of educational displays. If you can help with free materials, they may be willing to dedicate space in the hospital lobby or waiting rooms to Parkinson’s!
- Whichever one you pick, distribute educational materials, the inspirational PDF Creativity and Parkinson’s calendar and copies of the PDF publication catalogue so the professionals can order materials later that are more relevant for their practice.
Resources for Health Care Professionals
PDF is committed to providing health care professionals and their patients with the tools they need to understand the latest in Parkinson's research and care, treat it effectively and find resources in their communities.
- Continuing education credits (CEUs) are available for health care professionals who participate in PDF's PD ExpertBriefings, free online seminars presented by leaders in PD research and care. The cost is underwritten via PDF’s sponsorship of the American Society on Aging.
- Free copies of PDF’s free educational materials are also available for order. Many health professionals keep copies on hand for patients, while others keep a "library" of materials for lending.
- View Parkinson's Across the Lifespan: A Roadmap for Nurses
- View Parkinson’s Disease: A Practical Approach to Evaluation & Treatment for the Physical Therapist
- View PD ExpertBriefings
- Order Educational Publications
In 2011, PDF Research Advocate Gordie Guist, of Camden, ME, set up a display of educational materials and books about Parkinson’s in his local library.
In April 2011, John Baumann of, Louisville, KY, and Linda Hinkle and Mary Yeaman of Indianapolis, IN, partnered with the NBA’s Indiana Pacers to hold an awareness event. Centered around a game, it included educational handouts and a reading of a proclamation at half time.
The same team of PDF Research Advocates: — John Baumann, Mary Yeaman and Linda Hinkle (see page 18) — staffed a PDF informational table the Sixth Annual Frances E. Lang Living Well Symposium in Louisville, KY, held by the Parkinson Support Center of Kentuckiana.
In 2012, PDF Creativity Artist John Fasulo of Beacon, NY, combined awareness, fundraising and creativity. His nearby library, Butterfield Memorial Library, held an exhibit of his works, “Railroad and Other Images.” Ten percent of all sales of his prints supported PDF’s programs!