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NYLI Members
 

Get to know some of our members...

Michelle Cecil
Michelle Cecil

I have Von Willebrands Disease Type 1. I have been actively involved with the Great Lakes Hemophilia Foundation since 2000. During that time, I have served on a variety of committees. I have attended Camp Bold Eagle since I was six years old. I currently attend the University of Wisconsin Oshkosh and am very involved in campus life; I am currently an active member in United Students in Residence Halls. I am a double major in Communication and Human Services Leadership with a German Language minor (Ich liebe Deutsch!). With these majors I hope to one day with non-profit organizations that are focused on individuals with chronic conditions. My hobbies include reading, watching TV, hanging out with my friends, traveling. I joined NYLI because I want to make a positive impact in the bleeding and clotting disorders community. I know that we as a youth organization we have the ability to do incredible things for our community. I am excited to be a part of such an amazing organization which empowers each other to make a change and impact in our community.

Benjamin Charles
Benjamin Charles

I was born and raised in Green Bay, WI. Hemophilia has always been a part of my life, having been diagnosed with Severe Hemophilia A at birth, but I have always tried hard to not let my disease define me. I’m currently taking my undergraduate classes at UW-Green Bay to eventually pursue a career in Athletic Training. I feel that the best way to deal with Hemophilia, or any condition for that matter, is to educate yourself as much as possible and then to pass that information on to others. This is the reason I joined NYLI. Even though I have always tried to give back to my local HTC, NYLI allows me to further myself and allows me more options to give back to the community that has given me so much, and helped me be the person that I have become today.

Callie Clark
Callie Clark

I have von Willebrands Type 1 and I’m from Toledo, OH. I’m associated with both the Northwest Ohio Hemophilia Center and the Hemophilia Foundation of Michigan. I’ve been both a camper and a counselor/waterfront staff at Camp Bold Eagle. I attend Miami University in Oxford, OH and I’m majoring in Exercise Science with an emphasis in Physical Therapy. I’m hoping to attend Physical Therapy school in the future. I really enjoy dancing and am an active member of my dance company on campus at Miami. I joined NYLI because I wanted to play a more active role in the bleeding disorder community. I also wanted to meet lots of new people and travel to new places. I hope to as a NYLI member be a good advocate for young adults in our community and be a good role model to the younger generation of people with bleeding disorders.

Sami Jankins
Sami Jankins

I’m a 24 year old resident of Milwaukee, Wisconsin. I have antiphospholipid antibody syndrome, and have experienced blood clots in my arms, lungs, and brain. I’m the current co-chair of the National Hemophilia Foundation’s National Youth Leadership Institute. I also have been volunteer contributor to HemAware Magazine and the Steps for Living Task Force. I have a Bachelor of Arts in Theatre from the University of Wisconsin-Milwaukee. During college I held an internship with Wisconsin senator, Herb Kohl. I currently run an organization I founded, C.H.O.I.R. Stars, which provides arts program for chronically ill teen and young adults. I started singing, dancing, and participating in theatre productions at the age of four, and recently finished writing a full-length musical entitled Songs for November. I have had multiple poems published and play piano, ukulele, and drums. Having dealt with numerous health disorders since birth, I know what it is like to spend a great deal of time in the hospital, and the arts for me have been a wonderful means of personal expression.

Sean Jeffrey
Sean Jeffrey


I am a 21 year old living with Hemophilia A. Hemophilia has always played a large role in my life, personally and socially. I currently go to school at the University of Montana and study Psychology and Women and Gender Studies. I plan on becoming a relationship and sexuality therapist in the future. I have been involved in numerous hemophilia related activities throughout my life. Currently I am in the NYLI and I am an alumnus of the Step Up Reach Out international hemophilia leadership program. I also am a counselor at summer camps in Colorado and work with not only hemophilia but many other disorders too! NYLI is a wonderful program and has taught me many things that I can apply to the future as well as allowed me to create bonds with some of my closest friends.

Sara Jestrab
Sara Jestrab

I am from Havre, MT, but currently reside in Bozeman, MT, while finishing my Bachelor of Science in Family and Consumer Sciences. After I graduate, I would like to continue onto graduate school for a Master’s of Social Work. I have von Willebrands type one and was diagnosed at age sixteen. I am affiliated with the Rocky Mountain Hemophilia and Bleeding Disorders Association (RMHBDA) which supports Montana and Wyoming. I decided to join NYLI because the bleeding disorder community for Montana and Wyoming is very small. Growing up in a rural town with limited emotional and social support was difficult. Through NYLI, I would like to better my leadership skills and bring motivation and support back to my chapter to empower others to be their own advocate.

Alexandra Johnson
Alexandra Johnson

My name is Alexandra Johnson, I am 21 years old, and I am a senior at Michigan State University in East Lansing, Michigan. I graduate in May 2012 with my Bachelor's in Biomedical Laboratory Diagnostics with a minor in Philosophy. I will begin a Master's in Public Health following my undergraduate degree, and I plan to attend medical school afterward. My long-term goals include becoming a physician and working internationally to improve the lives of patients with bleeding disorders, as well as those with HIV and AIDS. I am currently a member of the NHF's Annual Meeting Planning Committee, and in 2011 I was a member of the Steps for Living Task Force. Last fall I was awarded the Susan Skinner Memorial Fund Scholarship, and as a result I will attend the World Federation of Hemophilia's World Congress, in Paris this July. I have been a counselor at Camp Bold Eagle since 2009, and have volunteered at several activities throughout the years for the Hemophilia Foundation of Michigan. I have contributed to HemAware articles and participated in a Podcast for the Steps for Living website. I am currently a member of the Victory for Women Task Force, and co-chair of NYLI. In my spare time, I enjoy running, reading, writing, and volunteering for the Capital Area Response Effort, an organization dedicated to the eradication of domestic violence in my county. I look forward to dedicating my career to scientific research and clinical care, and I am inspired to give back to a community that has given me so much.

Michelle Finnerty
Michelle Finnerty

I am from a small town just outside the Lansing area in Michigan. I was diagnosed at 11 months old with severe von Willebrands Type 3. When I was six years old, I started attending Camp Bold Eagle every summer in Michigan. I’ve been going ever since and am now the Arts and Crafts Program Director, which was always my favorite activity as a camper. I am constantly counting down the months until I reunite with my friends and campers. Nothing compares to the common ground and absolute fun we all share! I joined NYLI this year to make a difference in the lives of youth with bleeding disorders. I feel it is important for them to know any dream they have is attainable despite having a blood disorder, and that being your own self advocate is essential. I’ve just recently become a certified phlebotomist and am currently attending school for Nursing. My dream is to specialize in Pediatric Hematology to make the things I love in life my career and to help make a difference within the community.

Amanda Lee
Amanda Lee


I am the older sister of a wonderful brother who is living with vWD. I was born and raised in Phoenix, AZ (Glendale, to be more specific) and currently attend the University of Arizona in Tucson. My work as a camp counselor with the Arizona Hemophilia Association has been one of the greatest experiences in my life. For this reason, I became involved with NYLI. My hope is to give back to the bleeding disorder community just a portion of what it has given to me and my family. I am about to earn my bachelor's degree in Molecular and Cellular Biology, with a minor in Public Health. I hope to continue my studies in Public Health while earning my master's degree and joining the Peace Corps. As far as recreational activities, I thoroughly enjoy reading, running, and spending time outdoors.

Meghan McDonald
Meghan McDonald

I study dance and neuroscience at Smith College in Northampton MA, but I am originally from Louisville KY. I was diagnosed with von Willebrand Disease at birth. When I'm not in dance class or lab, I am out on the water kayaking or on a wall rock climbing. I also enjoy playing bananagrams with my friends, reading books, and hiking. I have has been an active part of the National Youth Leadership Institute (NYLI) for the past four years, participating in Washington Days, NHF Annual Meetings, and Youthfit. My favorite part of the year is summer camp where I get to sport superhero capes and play bopper tag! I have had the pleasure to attend hemophilia camps in Oregon, Northern California, Washington, New England, and Tennessee.

Sachin Rudraraju
Sachin Rudraraju

I was born in Andhra Pradesh, India, but my family choose to move to America in order to care for my Hemophilia. I am currently a high school senior in Powell, OH. Although I haven't decided where I will be going to college yet, I hope to study medicine and pursue a major in Economics. Service has always been of the utmost importance to me. Currently, I tutor a group of high school and middle school students in Writing every Saturday and started a non-profit organization that refurbishes and recycles old computers. I also volunteer at various events with my chapter. NYLI allows me to give back to the hemophilia community on a large scale. I hope to influence parents as well as their children to live normal, healthy lives. Some of the things I enjoy include music, art, tennis, climbing, traveling, and of course, Television.

Patrick Ryan
Patrick Ryan

I have severe hemophilia A and I was born in San Antonio, Texas. My efforts to get involved in the bleeding disorder community started when I was 10 years old when I volunteered at a hemophilia Christmas party. After that, I participated in Washington Days and Austin Capital Days, Hemophilia camp in Texas and Oklahoma, Hemophilia Leadership Retreats, 1st Step and SURO. I continue to help educate people inside and outside of the hemophilia community, as my desire to get more involved continues to grow. I am majoring in Information Technology and I enjoy traveling, fencing, and reading. Hemophilia will always be a part of my life, but I will never let it keep me from living it.

Jozef Zwier
Jozef Zwier


I am from Janesville, Wisconsin and have been part of NYLI since 2010. I have been active in the bleeding disorders community for 13+ years. Outside of volunteering in the community, I am a music nerd (my friends say "elitist" but let's not split hairs...) and listen to it constantly. I also play acoustic guitar, bass, keyboards, and air drum really well. I am nearly finished with a Bachelors degree in Public Administration and plan to stay involved in the bleeding disorders community well past my time in NYLI!