Reaching the Media
Mr. Mark Dvorak

Mark has been heavily involved in the Spastic Paraplegia community for quite some time. However, he began a most significant journey into the realms of public advocacy this past year for HSP via NORD – the National Organization of Rare Diseases. Though nervous when he first embarked on his media and letter writing campaign, his efforts paid off. His home state of Oklahoma, along with thirty-seven others, declared February 28th “Rare Disease Day.”

A disease is considered rare if it affects fewer than 200,000 people. Welcome to the world of HSP and PLS! Currently there are more than 6,000 rare disorders that, when combined, affect approximately twenty-five million Americans. Out of those 6,000 disorders, only 200 have an FDA approved therapy. For more information about NORD, please go to www.rarediseaseday.org.   If your state hasn’t recognized February 28th as “Rare Disease Day,” follow Mark’s lead and contact your Governor’s office.

Mark’s presentation outlined eight steps to increase media awareness about diseases like HSP and PLS.  Step One has already been mentioned. Notify state Governors and Congressmen about the issues that are important to you: wheelchair accessibility, research funding, HR 804, and accessible travel are just a few of the issues that need to be addressed on broader and more vocal public stages.

Step Two is simply to begin making a media list pertaining to your specific geographic area. Brainstorm about the local television and radio stations you listen to, as well as the newspapers you read and the community organizations in which you are involved. If a large metropolitan area is a bit daunting to cover, enlist the aide of family, friends and co-workers. Know someone who is only into country music? Jazz? Rock and Roll? Oldies? They can help get a media list together that includes a broad and varied audience.

Steps Three and Four is where the “footwork” really begins. Use basic computer skills to type up media lists on the computer  so that you can easily add to and expand the information that will be needed to begin notifying others about your personal awareness campaign. Learn how to best  use the internet as a viable tool. There are many search engines out there, some good and others not so much. The point is, there is a wealth of information on the internet that can help you become an informed citizen about the things you wish to know and the means with which to accomplish your task. When experimenting on the internet, don’t forget about ‘Goodsearch’. This search engine donates a penny to SPF each time it is used. Once you find the web pages for radio and television stations, newspaper and community organizations; you will be able to ferret out e-mail addresses, street addresses and names of various personnel with whom you can begin your media awareness campaign.

What is Step Five? Write your letters. Be truthful and to the point when writing – only you can describe what you are feeling and experiencing. A sample Media Kit has been developed by the SP Foundation and is posted on the PLS Awareness Page of the SPF web page – click on www.sp-foundation.org.   Don’t be intimidated and try not to get frustrated, just write, write, and write!

Step Six and Step Seven are crucial to success. Increase your visibility and create awareness wherever and whenever possible. Don’t be self-conscious and encourage questions and conversations about your disease or involvement in the foundation. This can be done in a variety of ways: TeamWalks, Penny Jars, E-mail Support Groups, Outreach Programs, and how about this - just a good ol’ party? Raising awareness about the goals we want to reach and the struggles we all face can be fun. When hosting a party, make sure pictures of you and your SPF friends are highly visible. Do you have a group photo at a particularly enjoyable yearly conference or a great picture of you and your family at a TeamWalk? What about a picture of you and a staffer on Capitol Hill? I bet a copy of Chloe Magazine on a desk or table would get a second look. Your guests will notice these things and will probably make a comment or ask a question. Once this happens, you’ve got an excellent opportunity to increase awareness and to subtly introduce your friends and acquaintances to the variety of ways each of them can help.

Step Eight is this: Knowledge is Power!! All of us need to become adept at answering a variety of questions that come with having a disease or a cause which is important to us. We need to be able to comfortably converse about the physical hurdles we face each day, the lack of funding for research, the need for legislative action and advocacy, and be able to describe the ways our family, friends and acquaintances can lend their support to a worthy cause. In Mark’s words, “Our community does not have a celebrity to help with raising awareness or funds for the Spastic Paraplegia Foundation.” This then, leaves only us. We are the ones who have to become dedicated and vocal Ambassadors for our causes – the eradication of rare diseases such as HSP and PLS!!!

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