Ana Alejandra Tabar is 34 years old and currently lives in New Jersey, though she grew up in the Dominican Republic. In 1999, her oldest brother was diagnosed with Fanconi anemia, prompting Ana to be tested and subsequently diagnosed as well. Sadly, her brother passed away in 2000 from leukemia. He inspired Ana and her family to establish “Un Corazón por Fanconi,” a foundation focused on developing a diagnostic protocol for FA patients and spreading awareness about FA in the Dominican Republic. Ana works as a graphic designer and loves art, warm weather, the beach, and spending time with her family.
Egil Dennerline is a 46-year-old Danish-American poet and singer/songwriter who lives with FA. Since his first cancer in 2011, Egil has been invited to share his FA story through various media channels. He speaks about turning perceived weaknesses into strengths and how having a life-threatening illness can (ironically) foster an overwhelming love and appreciation of life. He has published four poetry collections and made four studio albums; most recently the debut album "Waiting," with his new band, Wall to Wall. Egil also works as a freelance film producer and recently produced his second feature film. He lives in Denmark with his wife and daughter.
Alexander was drawn to the public health field as a way to promote health and wellbeing within a framework of equity and social justice. He earned his Bachelor's degree in Communications from Temple University and his Master's in Public Health from Portland State University. He most recently implemented grant-funded food access and health education programs for at-risk and homeless youth. In his role as Research Program Manager, he works to advance FARF's research priorities, including managing the grant award process and assisting with scientific initiatives. Alexander is thrilled to join the passionate FARF team and bring to this new role his drive to advance the organization’s mission.
Last year he relocated to peaceful Eugene after a decade in Portland. Alexander is an enthusiastic photographer. He also enjoys reading, travel, and cooking. He spends his free time loving on Oregon’s abundance of farms, forests, and food.
Amelia is 26 years old and lives in Sydney, Australia. After receiving her FA diagnosis in her early 20s, Amelia flew across the world to attend her first meeting for adults with FA in 2017. Since then, she has become a leader in the community, sharing her story and advice with younger generations. In 2019, Amelia and her family began the process to start an Australian FA support organization to connect FA families and researchers across Australasia.
Angela is a 27-year-old independent artist, avid botanist, and budding researcher who lives in Minneapolis. She developed an interest in science during her bone marrow transplant as a teenager. This inspired her to complete a degree in biomedical engineering. In 2018, she received the Amy Winn & Christopher T. Byrd Award for Adults with FA. Her hope is to work in biomedical engineering research and to act as a bridge between patients and scientists.
Jack is 20 and lives in Park Ridge, Illinois, where he is a student of philosophy and business administration at Northeastern Illinois University. Jack has also spoken at several fundraisers all over the country, telling his story and expressing to supporters just how crucial their role is to advancing research. In 2019, he received the Amy Winn and Christopher T. Byrd Award for Adults with FA, for his work as an advocate, speaker, and student determined to make a difference. After he graduates, Jack hopes to pursue a PhD in a philosophy-related discipline and eventually start his own research and technology company.
Mary-Beth is a 27-year-old private chef based in Chicago. She works as a private chef and shares her culinary creations with the world through her blog, Heart of Celebration. A talented writer and speaker, Mary-Beth has spoken at FARF fundraisers, meetings and scientific symposia. She brings an authentic and unique perspective to what it means to live with FA in today's world and has openly shared her story with the FA community.
Jasmine is 28 years old and currently lives in Florida. Jasmine was diagnosed with FA as a teenager and received a bone marrow transplant in August 2019. She has been a leader in the FA adult community and currently serves as co-chair of the FAdult Council, an advisory council formed last year to advocate for and represent the growing adult FA population. An avid photographer, Jasmine put her skills to use working for Apple in Florida and in California. She has traveled around the country to speak at FARF events and has inspired many with her enthusiasm and authenticity. In her own words, "I am most excited to have the opportunity to impact that patient and family community for the better. I look forward to bringing the patient perspective to the board, and to being someone my fellow adult community can speak through."
Matt is 22 years old and lives in Park City, Utah, where he works as a recreation instructor at the National Ability Center. Matt has been a leader in the FA community since he was young, first as a fundraiser when he organized an annual kickball tournament at his elementary school. He has spoken at several FARF fundraisers, meetings, and scientific symposia. Matt previously worked with FA researcher Alan D'Andrea and was the inaugural recipient of the Amy Winn and Christopher Award for Adults with FA in 2017.
Duncan is a 23-year-old scientist who lives in Boston, Mass. He is currently working as a scientist at Novartis Institute for Medical Research. He previously worked in the FA research lab of Dr. Niall Howlett at the University of Rhode Island. In addition to his interest in science, Duncan has also proven himself an effective fundraiser for FARF.
Tracy is a longtime supporter of the Fanconi Anemia Research Fund, both as a donor and as a volunteer at the annual benefit concert in Eugene each spring. She has served the Eugene community by volunteering in several public schools, which inspired her to pursue degrees in English Literature and Education. She went on to teach English at an alternative school for at-risk students, a job she found incredibly meaningful.
The Fanconi Anemia Research Fund is not the only disease-focused organization Tracy serves. She is also on the board of the Oregon Cancer Foundation, an organization that provides financial assistance, support, and education for cancer patients and survivors in Lane County. Tracy is enthusiastic about supporting FA research and families, and is particularly interested in the connection between FA and cancer.
A fourth-generation University of Oregon fan, Tracy also gives her time by supporting athletic events as a member of the booster club, Daisy Ducks. She is a mother and grandmother who loves spending time with her family, friends, and her yellow lab, Mazie.
Jordan joins the FARF team as Family Services Director, a role well-suited for her education and experience working with families facing challenges in healthcare. She received her bachelor’s degree in psychology, then went on to earn her master’s in social work. She is also working to obtain her license in clinical social work. In her last role, Jordan worked with families and survivors of trauma in a hospital setting and is eager to now join the nonprofit world. “I have had a heart for nonprofit work since I was a child. I'm honored to be joining a team that promotes and aids access to quality research, education, programs, resources, community empowerment, and quality healthcare services to those affected by this complex illness.”
Jordan is a big believer in empowering people with the tools they need to overcome their challenges, rather than telling people how to overcome their challenges. “It's the difference between working WITH a population and working ON a population. Most folks have what it takes to face their challenges, oftentimes they benefit from someone to remind them of their strengths. This is how I envision my role at FARF, reminding individuals and families of their incredible strengths and supporting them along their journey. Additionally, I look forward to working with those affected by FA to create effective programs that will facilitate empowerment within the FA community at large.”
When she’s not working with the FA community, you could find Jordan taking on any number of outdoor activities, including hiking, backpacking, snowboarding, and wakeboarding. She’s also an avid traveler, having visited 21 countries and counting!
Which qualities do you appreciate the most in others? Humility, compassion, thoughtfulness, and a sense of humor.
Barbara Burtness, MD is Professor of Medicine (Medical Oncology) at the Yale University School of Medicine and Yale Cancer Center. She serves as Co-Leader of the Developmental Therapeutics Program and the Disease Aligned Research Team Leader for Head and Neck Cancer. Dr. Burtness is internationally recognized for her research in head and neck cancer. She chairs the Eastern Cooperative Oncology Group Head and Neck Cancer Committee, and leads national and international trials of targeted therapy in head and neck cancer. She comes to Yale from Fox Chase Cancer Center, where she co-led the Developmental Therapeutics Program, was Chief of Head and Neck Oncology and served as Associate Director for Clinical Research.
Originally from Salt Lake City, Utah, Julia moved to Eugene in 2014 to attend the University of Oregon. While pursuing her degree, she worked in the Parent and Family Programs department as an event coordinator, organizing gatherings for students and their families throughout the year. In her free time, she participated in the university weightlifting club. Julia graduated with a degree in Business Administration with a concentration in marketing. She brings her event and marketing experience to FARF as the Family Fundraising Manager, working with FA families to organize and optimize their fundraising efforts. Julia is excited to join the FARF team and help support FA families as they coordinate creative, fun, and successful fundraisers.
Joyce was a dear friend and neighbor of co-founders Lynn and David Frohnmayer; their daughters were playmates. When Kirsten Frohnmayer was diagnosed with FA, they were all devastated. Joyce, a molecular biologist, was able to help interpret information. When the Frohnmayers founded FARF, Joyce was one of the earliest board members. She did the page layout and editing of the FA Family Newsletter for a number of years, and several editions of the Handbook for Families and Guidelines for Clinical Care. She also designed the first FARF website.
Dr. Haendel's vision is to fundamentally alter the fabric of biomedical science, utilizing her art as a data translator to weave together healthcare systems, basic science research, and patients; through development of data integration technologies, innovative communication strategies, and collaborative education and outreach.
Her demonstrated success in leadership of cross- disciplinary international teams, development of applications used for rare disease diagnostics, implementation of platforms and tools for translational research, and open and reproducible science will serve the community at large to effect real change.
Kathryn P. Pennington, MD, is a faculty member in gynecologic oncology. She specializes in the treatment of gynecologic cancers, including ovarian, uterine, cervical, vulvar and vaginal cancers, as well as gestational trophoblastic disease.
Dr. Pennington's clinical expertise includes minimally-invasive surgery and complex pelvic surgery, treatment of gynecologic cancers with chemotherapy and gynecologic cancer survivorship.
Dr. Pennington believes that cancer care is a partnership, and she strives to empower every person to be actively involved in her care. Every patient should be treated with compassion and honesty. She aims to provide the best care for her patients using a comprehensive, multidisciplinary and individualized treatment approach.
Jeffrey Siegel, MD, is Executive Director, Translational Medicine, Inflammation Clinical Research at Gilead Sciences. He received his medical degree from Yale University School of Medicine, internship and residency training at the University Hospitals of Cleveland, clinical fellowship training in Rheumatology at University Hospitals of Cleveland and basic science research training at the NIH in Immunology and signal transduction. After fellowship, he joined the Naval Medical Research Institute for 5 years where he served as Branch Head, Signal Transduction. He then joined the FDA and was there for 14 years, serving as Supervisory Medical Officer, Clinical Team Leader in Rheumatology. He previously worked at Genentech as Senior Group Medical Director in the Product Development Immunology department.
Jennifer R. Grandis, MD, is a Professor in the Department of Otolaryngology – Head and Neck Surgery (OHNS), and she is the Associate Vice Chancellor—Clinical and Translational Research (AVC-CTR) at the University of California, San Francisco. She received her medical degree from the University of Pittsburgh School of Medicine, Pennsylvania, and she completed her internship from the same institution. Dr. Grandis completed both a residency and an Infectious Disease fellowship from the University of Pittsburgh School of Medicine, Pennsylvania. Prior to joining UCSF, Dr. Grandis was the UPMC Endowed Chair in Head and Neck Cancer Surgical Research and Distinguished Professor of Otolaryngology and Pharmacology and Chemical Biology at the University of Pittsburgh. She led the Head and Neck Cancer Program and was the Vice Chair for Research in the Department of Otolaryngology.
Mike grew up in San Francisco and received his bachelor’s degree in accounting from San Francisco State University. As a child, he spent his summer vacations at the family ranch in Wyoming, where he developed a love for fishing and motorcycles. After moving to Santa Cruz, Mike worked for a large nonprofit for many years while cultivating his passion for surfing and racing motorcycles. Moving to Oregon with his two dogs, Lucky and Peanut, Mike has achieved his lifelong dream of building his motorcycle track and pursuing his love of surfing and the outdoors.
Mother of Dylan
Lisa joined the Fanconi anemia “FAmily” in 2007, when her 5-month-old son, Dylan, was diagnosed with FA. A world traveler, Lisa has a love of meeting new people and experiencing other cultures. She has lived and worked in four continents and currently lives in Vancouver, Canada with her New Zealand-born husband, Mark, and their two boys, Connor and Dylan. As a Canadian CPA (Chartered Professional Accountant) and CPHR (Chartered Professional of Human Resources), Lisa has experience working across a variety of industries in the Finance, HR, IT and Project Management spaces. Presently, she owns and operates a small architectural practice with her husband. Lisa is looking forward to her continued involvement in progressing FA research as a board member and fundraiser. She and her family have held community-based fundraisers in Vancouver since 2011. Of particular interest to her is expanding FARF's connection to the international community.
Father of Evan and Becca
John and his wife, Kim, are the proud parents of six children: Evan, Claire, Rachael, Leah, Sarah, and Becca. John is the Owner and President of D2 Ingredients LP, a manufacturer and distributor of food ingredient technology. Since Evan was diagnosed in 2002 at six weeks old, John and Kim have dedicated themselves to helping advance research and work for a cure by hosting numerous fundraisers over the years. In addition to serving on FARF's board, John is very active in the community of Green Bay, WI, serving on the school board for Notre Dame of De Pere and local Church finance council.
Dr. Haworth is a post-doctoral fellow in the Kiem Lab in Seattle. The Kiem Lab studies cell and gene therapy with a particular interested in the biology of blood and marrow stem cells and the development and use of novel genome editing technologies. The overall goal is to develop better stem cell transplant and cell and gene therapy treatments for patients with genetic and infectious diseases and cancer.
Recent studies from the Kiem lab have examined the role of endothelial cells in iPSC-derived HSC specification and expansion. We have also used endothelial cell support to expand adult marrow HSCs and used novel small molecules for expansion. We have demonstrated successful ex vivo expansion of human cord blood cells when cultured in the presence of specific small molecules. We also have 4 active clinical gene therapy studies. One study aims at treating patients with glioblastoma and we have now treated 7 patients and have shown in our most recent manuscript improved survival in high-risk patients with glioblastoma. One clinical study involves the correction of the genetic defect in blood and marrow stem cells from patients with Fanconi anemia and we have now treated 2 patients. Two clinical studies involve gene therapy approaches for patients with HIV and lymphoma undergoing either primary chemotherapy or requiring an autologous HSC transplantation. The Kiem lab is also part of multiple collaborations to improve the efficiency by which HSCs can be cultured and transduced, while closely monitoring the gene modified clones through cutting-edge high-throughput retroviral integration site analysis.
Prof. Agnieszka Czechowicz is a faculty member within the Department of Pediatrics, Division of Stem Cell Transplantation and Regenerative Medicine at Stanford University. She previously spent a decade on the Farm as a Stanford undergraduate, medical student and graduate student and completed her PhD work with Prof. Irv Weissman one of the great leaders in stem cell biology. As a physician-scientist, Dr. Czechowicz subsequently did clinical training in Boston, completing her residency in Pediatrics at the prestigious Boston Children’s Hospital and pursued subspecialty training in Pediatric Hematology/Oncology at the Dana Farber Cancer Institute while simultaneously conducting postdoctoral research with Prof. Derrick Rossi and Prof. David Scadden. Her primary clinical interest is in bone marrow failure and aplastic anemia, and in other diseases commonly neccessitating stem cell transplantation.
Dr. Czechowicz is a strong physician-scientist and advocate of translational research. She has done pioneering work showing that hematopoietic stem cell depletion is a critical component to donor hematopoietic stem cell engraftment, and multiple pre-clinical and clinical therapies are in development based upon her studies. She is passionate about mentoring and training future generations of physicians and scientists, and is very supportive of helping diverse trainees on various traditional and non-traditional career paths.
Sudhir is a physician researcher with over 15 years of experience leading early stage projects and companies. Before coming to FARF, he was the Medical Director at Strand Genomics, where he was instrumental in developing customized gene panels in rare diseases and cancer, including launching a liquid biopsy test. He oversaw clinical reporting in collaboration with clinicians across the globe for over 5,000 patients per year, of which over a 1,000 were in rare diseases. As Translational Science Director, Sudhir leads development of FA translational science by working with academic and industry partners to pursue clinical research opportunities to better understand and treat FA. He manages translational projects including the development of a clinical registry and tissue bank.
A graduate of St. John’s Medical College, Bangalore and the Sloan School of Management, MIT, Sudhir is passionate about integrating emerging technologies into medicine. He is an aspiring writer and still has mixed feelings about why Bob Dylan won the Nobel prize in literature and Philip Roth didn’t.
Isis brings both scientific and nonprofit expertise to FARF and the wider FA community: she earned a doctorate in cancer biology from the University of Arizona in 2007 and a certificate in nonprofit management from the University of Oregon in 2016. She was an NIH-funded cancer researcher at the University of Arizona for over 10 years, where she focused her research on the role of nerves and environment on tumor growth. Following this, Isis worked as a biomedical research consultant and coach for academic centers across the country, contributing to federal grant proposals focused on clinical and basic research. As Director of Scientific Operations, Isis spearheads initiatives to maximize the progress and success of FA research. She oversees the grants program, develops scientific meetings, and serves as the scientific bridge between all pillars of the organization. “I am very excited to bring new ideas and direction to the research focus of the organization, and to work with all the brilliant minds of the FA community on a path of discovery to combat FA. Ultimately, I am excited about the possibility of contributing to a solution that will one day eliminate suffering from this disease.” In her free time, Isis enjoys running and exploring the many nature trails in Oregon.
What and who inspires you?
My children, curiosity about the natural world and science, individuals who rise above hardship, and the possibility of influencing change and making a lasting and positive impact on the world.
You know when you meet someone who immediately feels like a long-lost friend? McKenna is that kind of person. Motivated by the power of philanthropy to identify challenges and create impact, McKenna works to increase FARF’s donor base, strengthen family fundraisers, and establish a sustained and planned giving program. A natural-born fundraiser, she brings years of experience in the nonprofit and educational sectors where she developed strategies to increase organizational outreach and impact. Most recently, she worked at the Arizona State University Foundation as a development officer focused on estate giving and major gifts. She earned her master’s degree in education in 2017. Her favorite part about philanthropy is working with others to marry community challenges and a sense of empowerment to make a difference. “I am honored to build upon the incredible fundraising foundation at FARF and am inspired by people who selflessly empower and elevate others.” McKenna grew up in West Linn, OR, and is happy to be back in Oregon, closer to family and away from the Arizona sun. In her spare time, she enjoys fostering dogs, camping, and spending time with family.
What would be impossible for you to give up?
My dog, Diet Coke, and sweatpants (in no particular order).
Aileen is a lawyer based in Portland, Ore. She was introduced to Fanconi anemia while attending law school with Jon Frohnmayer and taking classes from Dave Frohnmayer. She has worked in the legal nonprofit and education sector, and continues to support nonprofits with her legal and dispute resolution experience. Aileen grew up in Pittsburgh, Penn., and continues to be an avid Pittsburgh sports fan despite her distance. She and her partner recently bought their first home, with a fenced in yard that their dog adores. Aileen enjoys hiking and photography, and volunteers for several nonprofits in her free time.