Team:NYC B1O/Human Practices
Overview:
This year, although we were able to conduct experiments in the lab, our team was still committed to understanding the intricacy of Parkinson’s and its current treatments in order to accomplish our goal of creating a new targeted therapy. To this end, we reached out and conducted virtual interviews and events to cultivate our project. Scheduling seminars and speaking with researchers, receiving objective feedback on our proposals, and incorporating their advice gave us a huge boost in our general project planning. Using our various resources, we were able to organize fundraisers, general public engagement, and even volunteer work with PD patients to make sure NYC_B1O was improving the Parkinson’s community beyond scientific research. Below, we detail the conversations and events we conducted throughout our project.
Parkinson’s General Knowledge Surveys:
August 2nd, 2021 NYC_B1O Our team created a google form that was distributed on our social media platforms in order to identify people that had little to no knowledge of Parkinson’s disease. To raise awareness about the disease as well as research pertaining to synthetic biology, we emailed an informative email educating participants that responded by saying that they did not have knowledge about PD or the developments in synthetic biology. Additionally, the contact information was recorded and became very useful during our educational campaign later on during the year.
American Parkinson's Disease Association (ADPA):
September 10th, 2021 Dr. Rebecca Gilbert MD, PhD Dr. Rebecca Gilbert is the Chief Scientific Officer of the American Parkinson's Disease Association with decades of experience in the clinical treatment of Parkinson’s Disease. She is responsible for overseeing the research portfolio in ADPA’s Scientific Advisory Board while providing medical experience to ADPA’s web-based content. Our team was lucky enough to meet Dr. Gilbert on September 10th and introduced our project. She was happy to give objective feedback for our targeted approach and believed that our methods were both feasible and worthwhile. However, she asked what the implementation plans were for this potential cure. Especially with the development of nanoparticle treatment options, she asked if we had any plans for viral treatment options and our team walked through the pros and cons of different implementation options. Thanks to her, she gave great advice on our Project Implementation Section and connected us to another researcher experienced in alpha-synuclein aggregation, Dr. Shahnawaz. Additionally, we asked for feedback on our plans of interviewing and providing general company for PD patients as volunteers. Dr. Gilbert believed that it was a great idea and connected us to two PD patients under her organization.
Presentations in School:
September 23rd, 2021 St. Mary’s High School in Manhasset NYC_B1O had a great opportunity to present our Project Refold proposal to the St. Mary’s High School community of students and faculty. On September 23rd, we explained our targeted approach to Parkinson’s Disease and answered any questions that the students had about synthetic biology, bioethics, and Parkinson’s as a whole. Thanks to Ryan and Rae, we were able to present to 4 different classes and St. Mary’s students also filled out our surveys about their knowledge in Parkinson’s disease and synthetic biology.
Fundraising
October 2nd, 2021 Moving Day Campaign, Parkison’s Foundation Our team joined a renowned fundraising event called Parkinson’s Moving Day to show our support for patients suffering from Parkinson’s disease and to raise money for future research. B1O chose this campaign as it raised over 30.8 billion dollars and over 150,000 participants worldwide. All of our team members ran a min-marathon in Central Park and raised a total of $500.
Interviews with Parkinson’s Disease (PD) Patients:
September 26th, 2021- Present Day Mr. Elliot Barry After our initial conversation with Dr. Gilbert, we were able to conduct several virtual events with PD patients. We first started with weekly meetings talking about their day, their background, and their dreams. Then, these meetings quickly became more intimate and our team was able to incorporate virtual physical activities sessions with the patients as we found out that one of the best therapeutic methods of tackling Parkinson’s was frequent exercises. One of the stories from Mr. Eliot Barry was about the mental health challenges that he goes through on a daily basis. He talked about how it was hard to move around freely around the house, formulate things to say, and even swallow food. However, Mr. Barry told the team that after 16 years of diagnosis, he learned to take action of the things that he could control and detach himself from the things that he could not control. Our team realized that the lessons that were taught by this neurodegenerative disease were applicable to our everyday struggles as well and many members devoted themselves to further build a relationship with the PD patients.
Ms. Helena Rodriguez Helena is a 66 year-old woman living in Westchester county, New York, and agreed to share her experience living with Parkinson's disease. Her first experience with Parkinson’s was when was closing her car door one day. She knew that her finger was in the way of the door, but her hands were not able to move out of the way. She was diagnosed with Parkinson’s disease in 2010 when she was 55 years old, and had to quit her job in 2015. She has been taken in multiple drugs that would alleviate her symptoms, such as Carbidopa, a dopamine promoter, Amantadine, and Azilet which makes her tremors better. However, these medications only delayed the progress of Parkinson’s and brought unexpected side effects. She experiences nightmares due to usage of the medication, and has become dependent on her medicine, losing her ability to stand on her own. Her major symptoms of muscle stiffness are treated by her medication, but Parkinson’s memory loss, body rigidity and slowness in motions are untreated. By now, she has had this disease for more than ten years, but the inability to know what is going to happen in the future is her major concern. She has recently got into contract with NYU, and she has been providing her testimonies for a suggested cure for Parkinson's disease after taking the medicine NYU is developing.
Advocacy to Fund Parkinson's Research to U.S. Senator and Congressperson
October 7, 2021 The Michael J. Fox Foundation for Parkinson's Research Our team wrote a petition asking US Senator Kirsten Gillibrand (NY) and Congressperson Carolyn Maloney to increase funding for Parkinson's Disease research.
Fundraising and Donation for the Parkinson Research Foundation
October 7, 2021 Parkinson Research Foundation We fundraised and donated $100 to the Parkinson Research Foundation
Presentation
October 12, 2021 Stuyvesant High School Presentation We conducted a presentation at Stuyvesant High School to spread awareness of Parkinson's Disease, allowing students to understand the purpose and significance of the team's project.
Bioethics Presentation
October 16, 2021
The team created an educational presentation on the ethics of biotech for pre-teens and distributed it to our partners in the HS Korea team to use in their educational outreach.
