Meet the NYLI

Hey there, I'm Tony, short for Antonio Alexander, a 20-year-old from the vibrant city of Hartford, Connecticut. Currently, I'm pursuing General Studies at Manchester Community College, exploring different fields that spark my interest. Besides being a college student, I am also a photographer and an aspiring creative. I took my passion for photography to the next level by establishing my very own photography company. Capturing moments and preserving memories in a unique way brings me immense joy. But my journey is not just about personal growth; it's about making a positive impact on the lives of others. That's why I'm deeply involved with various non-profit organizations that focus on providing opportunities to children who are passionate about photography, videography, and other creative pursuits. Empowering these young minds and helping them discover their talents is incredibly fulfilling. Ever since I was little, I've been an active participant in HFA (Hartford Fine Arts), and their activities have shaped my artistic spirit. Now, I want to give back to the community that nurtured my passions by becoming a pillar of support and a role model for other children. Together, let's inspire and create a brighter future for the community we hold dear.

My name is Eliza VanZweden, and I am a 23-year-old woman living with a rare bleeding disorder called Glanzmann’s Thrombasthenia in which my platelets don’t work. I recently graduated with a Master’s in Biomedical Engineering, and I currently work as a process engineer in manufacturing cell therapies to treat cancer. In my free time, I enjoy crocheting, hiking with my dog Rocky, and attending sessions hosted by my local chapter, the Hemophilia Foundation of Michigan. A fun fact about me is that I am a certified Cheesemonger and I also used to raise alpacas on my family’s farm. I am looking forward to learning more about Advocacy, Education and Research through NYLI and volunteering with my local chapter!

Hi! My name is Marissa Johns, and I am from Shepherdsville Kentucky. I am a student at the University of Louisville where I am majoring in neuroscience with a minor in Spanish. I am currently involved in summer research with my local medical school where I hope to one day attend! I was diagnosed with Von Willebrand disease at the age of 12 and have been passionate about being involved and advocating for the community ever since! I joined NYLI in the hopes of meeting others like me and bettering the community as a whole, and I can’t wait for the future!

Nathan Mermilliod is a patient of severe hemophilia B and an advocate in the bleeding disorders community. Nathan has been involved in public speaking on hemophilia since he was only 5 years old, presenting his rare disorder to school faculty and community members. Always spreading awareness, he has spoken about hemophilia to members of Toastmasters and Rotary Club. In a nationally distributed speech for TSA officers at LAX, Nathan raised awareness of the unique needs of people with hidden disabilities in airports. In the bleeding disorders community, Nathan was an original member of Hemophilia the Musical, a participant in CSL Behring’s Portraits of Progress, a speaker at large HFSC events, and a recipient of the Teen Impact Award for Advocacy. In 2020, Nathan was proud to receive the National Ryan White Youth Award. Nathan is a current member of the NYLI 2023 cohort, and he is also a committee member of NHF’s National Research Blueprint working on the distribution of hemophilia research.

Paxton Mills is a student at the University of Richmond majoring in biochemistry and molecular biology and a member of the 2023 cohort of the National Youth Leadership Institute. As someone with a rare platelet disorder, Paxton is interested in immersing herself in and advocating for the rare/ultra-rare disorders community. She is also a genetics researcher in a biology lab and works for Rethink Waste, an on-campus group that promotes sustainability and maximizes waste diversion efforts.

Hi! My name is Shanthi Hegde, and I am a rising undergraduate Third year Cell and Molecular Biology major and a History minor in the Honors Program Northeastern University studying to be a doctor. I’m involved in DEIA initiatives within my university. I am spearheading initiatives such as making Greek Life more inclusive and accessible through the formation of the Accessibility Task Force. Through my experiences in NYLI thus far, I was inspired to create a university-level chapter to bring together other teens with bleeding disorders in my community together. As someone with a bleeding disorder and chronic illness, I am so excited to educate, empower, and inspire through NBDF NYLI.

Hello! I'm Vinh Tran, a Molecular Biology and Biochemistry major at Rutgers Honors College. Alongside my studies, I work as a Phlebotomist, drawing upon my passion for understanding the intricacies of the human body. Living with Hemophilia A, has inspired me to delve deeper into the field of hematology and I hope one day to work as a Hematologist. Currently, I conduct research at the Anthony Lab, investigating asparaginase, a drug to treat acute lymphoblastic leukemia, aiming to contribute to advancements in cancer treatment. When I'm not immersed in the lab or hitting the books, you can find me on the mats as part of the Rutgers Brazilian Jiu Jitsu Club.