Meet the NYLI

Hello! My name is Devin Smith and I have von Willebrand's Disease. I am currently attending Iowa State University pursuing a degree in mechanical engineering. Ever since being diagnosed with VWD at the age of 2, I have been involved with the community. I am looking forward to getting to experience many important bleeding disorder events, such as BDC, from a new perspective as a representative of NHF and an adult rather than just an attendee. In my free time I enjoy hiking and biking.

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.

Brian DuVal is a member of the 2023 NYLI cohort, member of the Hemophilia Foundation of Minnesota/Dakotas board of directors, and Advocacy and Outreach Coordinator at Hemophilia Federation of America. Brian also manages HFA’s “Blood Brotherhood” program. Brian is a graduate of the University of Nebraska, where he studied Finance and Political Science. Brian has aspirations of attending graduate school to earn a Master’s in Public Health, with a concentration in health policy. Brian wants to play a significant role in shaping the future of the industry of bleeding disorders and find ways to meaningfully incorporate the patient perspective in the business of healthcare.

Both Brian and his brother have severe hemophilia A. Coming from a background where chronic conditions are common in his family, Brian is driven by his experience as a patient and a caretaker to be a dedicated advocate for the bleeding disorders community.

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!

I am a student at the University of Colorado - Denver studying political science. I have a platelet disorder and have always been very involved with my home chapter in STL, but I have had the opportunity to start volunteering more with the Colorado chapter after moving out here this past year for school. One of my favorite things about this community is getting to meet people and expand my bleeder family. When I am not volunteering I love going hiking, watching soccer, spending time with my friends and family, and traveling! I am super excited to start my NYLI journey and to become a better advocate for those with chronic bleeding disorders.

I am a 19-year-old college student with Von WIllebrand type 2A. I have been advocating for bleeding disorders for years and I mainly focus on athletics.

Luke is a senior studying Biopsychology, Cognition, and Neuroscience at the University of Michigan. After graduation, he plans to go to medical school and become either a neurologist or psychiatrist. He was diagnosed with severe hemophilia A at birth. He is a part of his hemophilia chapter at Hemophilia Foundation of Michigan and actively volunteers for his bleeding disorders community by advocating for better health insurance for those impacted by bleeding disorders through annual Lansing Days. As a member of NYLI, he hopes to gain various professional skills that can help him make a long-term impact in the bleeding disorders community. Furthermore, through NYLI, he hopes to meet new people and make new friends. During his free time, he enjoys playing the violin, traveling to different places, and spending time with family and friends

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.

I am Sam, a Senior at Southern Virginia University (SVU). I am majoring in Biochemistry and Business Management. My career plan is to work as a hematologist researching the rare bleeding disorders. I currently work as both a Chemistry Tutor and Resident Advisor at SVU. If I'm not at work, you can find me at the gym, studying, or volunteering. I like to work with Remote Area Medicine (RAM) or with my local chapter. I am excited to work with my colleagues in NYLI and at NHF.

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 NHF NYLI.

Hello Everyone! My name is Swedha Rajaram. I am 20 yrs old and currently attending Michigan State University. I am majoring in Human Biology and have an interest to pursue a career in the medical world. I have recently joined the National Youth Leadership Institute through NHF. Through this program I plan to expand my involvement in the bleeding disorder community and integrate myself through research and volunteering. I am currently working as an analyst for a research study relating women and girls with bleeding disorders and the effect of telemedicine on diagnosis and treatment. My other interests involve swimming, painting, and traveling.

Hello! I am a undergraduate student attending University of South Florida. I am studying Biomedical Sciences. My career goal is to work in the Hematology field hopefully doing research to help further treatments for those with bleeding disorders. I am heavily involved in my local chapters, The Bleeding Disorders Coalition of Florida, Florida Hemophilia Association and the Hemophilia Foundation of Greater Florida. Some of my favorite things to do is to travel and go to Disney. I love going to the beach and going on new adventures with my friends and family.

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.