An interview with Josie Pfafflin: Let’s talk about Parkinson’s | Neuro notions advocacy.
Biography
My name is Josie and I am originally from Brooklyn, New York. My interest in Parkinson’s stems from the experience that both of my grandparents had, and continue to have, with the disease. I have always found the lack of research and awareness for Parkinson’s quite perplexing and aim at using a new approach (Social Media) to increase the attention being brought to Parkinson’s. I am a high school Junior who is passionate about raising awareness for Parkinson’s. With that being said, I am also extremely passionate about dance and find the importance of physical activity to slow neurological deterioration extremely important.
Can you tell me more about your Advocacy?
As stated prior, my interest in advocating for Parkinson’s stems from viewing the detrimental effects of Parkinson’s on my Grandparents. This sparked my passion for support and led me to my current form of advocacy, Social Media. I aim at using a newer and more effective platform to attract the younger and older generation into learning more about the effects, signs, and myths of Parkinson’s. My long term goal is to raise money for Parkinson’s research, and eventually contribute to finding a cure for this detrimental disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Due to my grandparents’ experience with Parkinson’s I have been able to see the true detriment of the disease and the importance of finding a cure. I got involved in Parkinson’s awareness and hope for a cure because of my long term interest in the medical field and the close proximity of this disease to my family.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
Individuals with Parkinson’s can view my advocacy as a way to gain more knowledge on the disease and better educate themselves on: Myths V.S facts, ways to donate, different Parkinson’s stories, etc.
What type of training and how long are the programs?
As of right now my organization is strictly focused on spreading awareness and raising money for Parkinson’s. With that being said, I hope to eventually expand my program and possibly offer training to those with Parkinson’s.
What effect can your Advocacy have on an individual with Parkinson’s?
My advocacy can help individuals with Parkinson’s learn more about their disease in a myriad of ways. With that being said it can also help those with Parkinson’s raise money for their condition.
What would you like to see as a future goal for your Advocacy?
I hope that my advocacy will eventually raise at least $10,000 for research and awareness, for Parkinson’s.
What events do you participate in?
As a high school student, I am planning on starting a club that does research for Parkinson’s and hosts student run events that raise money for Parkinson’s research.
How does this also assist the caregivers?
The research being done on Parkinson’s will eventually help caregivers due to the fact that it will influence their approach and make caregiving more effective and productive.
How can someone get in touch? What is your website?
My TikTok account: neuronotions is a great way to get in touch! My website is underway!!
How can others also become advocates for awareness?
To become an advocate for awareness, you can donate to various organizations, one being my GoFundMe: https://gofund.me/8d423c3d. Along with this, spreading awareness through social media is an easy and effective way to spread knowledge of Parkinson’s.
How can we get more teens and all ages to advocate?
I would like people to learn that I am a Highschool Junior who is advocating for Parkinson’s research. Along with this, I would like people to be knowledgeable of my passion for using art forms such as dance to slow down the detrimental effects of neurological diseases such as Parkinson’s. I have participated in research projects aimed at learning the positive neurological effects of dance. These neurological effects of dance among other sports, can possibly help slow the effects of Parkinson’s. Because of this research that I have done, I would like to further my knowledge on Parkinson’s by participating in professional research in a lab.
In your opinion, what is the key to effective advocacy?
In my opinion, the key to effective advocacy is listening and taking in knowledge of what you are advocating for. Advocating without proper knowledge is simply ineffective, that’s why my experience with individuals who experienced Parkinson’s helps me understand the detriment of the disease and the importance of advocacy.
How can we better fundraise to support a cure for Parkinson’s?
We can better fundraise to support a cure for Parkinson’s by supporting various small GoFundMe(s) that directly support non profit organizations that raise money for Parkinson’s research. Ex: https://gofund.me/8d423c3d.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I participate in 20+ hours of dance per week in order to support both my physical and mental health. I believe that the neurological benefits of dance could eventually aid those with Parkinson’s.
Why should people who don’t have Parkinson’s care about this?
People who don’t have Parkinson’s should care about this because Parkinson’s disease is currently on the rise and can affect a myriad of individuals and families. Therefore, Parkinson’s can affect individuals in unimaginable ways even when it may be unexpected or second hand.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my Grandmother and Grandfather have been diagnosed with Parkinson’s disease. More specifically, Parkinson’s was a contributor to the death of my grandfather.
If you had one song that would tell us more about you or represent your life, which song would it be?
My Way by Frank Sinatra encompasses the highs and lows that I have experienced in my life that have eventually led me to this point in my life.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Parkinson’s may change how we move, but it will never stop how we live, love, and inspire.”
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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