An interview with Anita Dust, Red Tulip for Parkinson’s Awareness
Biography
I have been very blessed with a life full of love from family, with support that enabled me to have a full-time career in health and life insurance and employee benefits with Key Benefit Administrators, Inc. Surprisingly, this line of work allowed me to use my desire to also be helpful to others, both through employee management and providing service to our clients.
Please tell me a little about your background.
After years of being a full-time working mom, I was starting to enjoy a little slower pace as I reduced work responsibilities. Then Parkinson’s hit and my life changed. The first year was the normal shock, learning about medications, exercise and acceptance. The latter may have been the hardest. Having always prided myself in leading a fairly healthy life, it was hard to believe this had happened to me. Fortunately, part of my healthy lifestyle included exercise so joining Rock Steady Boxing was an easy decision.
Can you tell me more about your Advocacy?
My advocacy is totally about increasing awareness in a new way to Parkinson’s but in a tried and true way, as proven by other disease campaigns.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to make the Red Tulip as powerful for Parkinson’s as the Pink Ribbon is for Breast Cancer. The advocacy for this started unintentionally. A Rock Steady coach loaned Dr. Dorsey’s book Ending Parkinson’s Disease to me. Chapter 3 emphasizes the need for a campaign like Polio, AIDs and Breast Cancer had, which all had symbols that people recognized and supported. Shortly after reading that, I realized the Red Tulip had been the official symbol for Parkinson’s since 2005, but it isn’t well-known. Let’s make it well-known so the public will get behind it and push for more research funds.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
People ask how they can help, how they can support our efforts. They want to know how they can help promote the Red Tulip symbol.
What type of training and how long are the programs?
We are in the process of developing a starter package for anyone who wants to use our materials to promote the Red Tulip in their community.
What effect can your Advocacy have on an individual with Parkinson’s?
Participating in our advocacy can make a person feel part of a bigger impact. Think about the individuals who showed up in the DC National Mall in 1987 to support the need for AIDs funding and research. One person at a time until there were more than 500,000 people who showed up. Sometimes just showing up is enough. Parkinson’s needs people to “show up.”
What would you like to see as a future goal for your Advocacy?
Our goal is to have individuals, small organizations and large organizations display the Red Tulip in multiple ways. Our goal includes having people without Parkinson’s join the fight and make the Red Tulip as recognizable as the Pink Ribbon is for Breast Cancer.
What events do you participate in?
We have been in existence for less than a year, but have attended many educational events sponsored by Indiana Parkinson Foundation, Parkinson’s Foundation and Rock Steady Boxing. in addition, we attended the Parkinson’s Policy Forum in DC in March and went to the Little Big Town concert for the Michael J Fox Foundation in Nashville in April, where we had the pleasure of having lunch with the Chief Policy & Government Affairs Officer, Dan Feehan, and Senior Philanthropy Relationship Manager, Kelsey Lewis, from the Fox Foundation.
How does this also assist the caregivers?
Our focus is awareness for everyone connected with Parkinson’s in anyway. When better treatments are found as a result of increased funding for research, caregivers will also benefit.
How can someone get in touch? What is your website?
Our website is redtulipforparkinsons.org
We are on Facebook, Instagram, TikTok, LinkedIn.
How can others also become advocates for awareness?
There are so many ways—big and small—and they are all important. Individuals can put a car decal on the back window, wear the swag from our online store in the website, write to Congress about Paraquat. Individuals can use our materials in their own communities to spread the word (see reference above about starter packets). Organizations can start including the Red Tulip logo on their materials without changing their own logo. Even vendor companies who sell products focused on people with Parkinson’s can include the Red Tulip.
In your opinion, what is the key to effective advocacy?
Discussion, discussion, discussion. Shake off any perceived stigma and be open about Parkinson’s. if you tell one person about Parkinson’s and the Red Tulip, you are an advocate.
How can we better fundraise to support a cure for Parkinson’s?
We believe this will be the biggest benefit from everyone using the Red Tulip. When all of the great Parkinson’s organizations come together under the unity of one symbol, awareness and attention for the seriousness of an impending epidemic will rise, resulting in significant increases in both donations and funding from the government. If you have any doubt, check out the history of the Pink Ribbon and Breast Cancer, when Breast Cancer survival rates went from 45% to 88%.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I go to Rock Steady Boxing 2 to 3 times per week, yoga and weight training each once a week, red light therapy, detox supplements and daily Bible reading. Have I mentioned that having Parkinson’s is more time-consuming than a full-time job?!
Why should people who don’t have Parkinson’s care about this?
We must educate the public that this is not only the fastest growing neurological disease in the world but it’s growing at an accelerating pace and impacting an increasing percentage of young onset.
Have you had any family members or relatives affected by Parkinson’s disease?
My family has had several with dementia/Alzheimer’s, but I am the first with Parkinson’s.
If you had one song that would tell us more about you or represent your life, which song would it be?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
History has shown what can happen when a movement unites behind a symbol. Believe in the power of a uniting symbol. . .the Pink Ribbon people did.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/
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