Dr. Bonfim oversees the Pediatric Stem Cell Transplant Program at the Federal University of Paraná in Brazil. She brings to the board of directors years of experience treating FA patients in Brazil, specializing in stem cell transplants. In addition to treating patients in Brazil, Dr. Bonfim serves as a point of contact for patients in other parts of Latin America and abroad. In 2016, she received the FARF Distinguished Service Award along with her colleague Ricardo Pasquini for her unwavering dedication and exemplary service to the FA community.
Father of Ivan
Pedro first learned about Fanconi anemia in 2001 when his then infant son Ivan was diagnosed. Over the last 20 years, Pedro and his wife Marina have connected with dozens of other FA families, participated in community events, and held a number of fundraisers. Pedro is the Director of Account Operations at Northwestern Memorial Hospital in Chicago, Ill., and has over 20 years of experience and extensive background in facilities trades, building automation, and mechanical systems.
Pedro brings to the board first hand knowledge of the FA world, based on his personal experience as a father. He hopes that his personal struggles as a parent of someone with FA can inform the organization and also provide support to affected families in the future.
Born and raised in Eugene, Jess brings experience and a passion for nonprofit work to the FA Research Fund. Before joining the FARF team, she spent years volunteering and working in nonprofits, most recently at Volunteers in Medicine in Lane County. "I'm driven by work that allows me to see real-life impact in the communities I serve." At FARF, Jess assists with fundraising and administration. She is the smiling face behind the scenes who processes donations, issues tax receipts, and is the point of contact for any and all donation questions.
A true Oregonian, Jess loves exploring the outdoors with her family. She's a big track and field fan and is a comic book nerd at heart!
Dr. Rio's work is focused on gene therapy and gene editing strategies to correct hematopoietic stem cells in patients with Fanconi anemia. Her team has designed a therapeutic lentiviral vector carrying the FANCA gene that has received orphan drug designation both by the EMA and FDA.
Under the direction of Dr. Juan Bueren and in collaboration with Dr. Julian Sevilla and other members of the FA network in Spain, Dr. Rio is conducting a phase I/II gene therapy trial to correct hematopoietic progenitors from FA-A patients using lentiviral vectors. Following the preliminary results obtained in this gene therapy trial, a global phase II trial is now ongoing under the sponsorship of Rocket Pharmaceuticals, Inc.
Her team is also deeply involved in the optimization of different gene editing strategies to correct hematopoietic stem cells from Fanconi anemia patients both in vitro and in vivo. They have shown that Non-Homologous End Joining (NHEJ)-mediated gene editing can be applied to correct specific mutations in hematopoietic cells from FA patients. Currently, they are implementing new gene editing tools applicable for other mutations. Additionally, they have started to test different in vivo delivery tools with the final aim of correcting hematopoietic stem cells from FA patients in vivo.
Originally from the suburbs of Chicago, Laura graduated from Northwestern University, where she earned a degree in Social Policy and French. Following graduation, she worked at the American Society of Nephrology in Washington, D.C. for two years. Laura recently earned her Master of Public Health degree from Emory University. During her time at Emory, Laura served as the treasurer for the Emory chapter of the Georgia Public Health Association and was a graduate research assistant for the Global Fortification Data Exchange.
At FARF, Laura is a part of the research team. She leads the administration of the research grants process, develops programs for scientific events, and helps to communicate FARF's scientific impact to stakeholders. She is looking forward to working alongside researchers committed to finding a cure for Fanconi anemia. After having lived in the Midwest, Northeast, and South, Laura is excited to be in the Pacific Northwest at FARF headquarters in Eugene, Oregon. In her free time, she enjoys exercising, reading, and spending time outdoors.
Rosie grew up in Central Oregon before moving west to attend the University of Oregon, where she majored in biology with minors in sociology and chemistry. Before joining the FARF team, her interest in nonprofits led her to work for the 4-H program in Central Oregon, then at United Way of Lane County, where she developed new programs and relationships with members and donors. In her role as Family Services Program Manager at FARF, Rosie assists caregivers and individuals affected by FA by organizing meaningful events, creating support and educational resources, and providing direct support along the FA journey. “I’m extremely thankful and excited for the opportunity to make a difference in this role that perfectly connects my love of science and helping others,” Rosie says.
Outside of work, you can find Rosie reading a historical fiction or mystery novel, biking next to the river, eating at her favorite local Thai restaurant, or spending time with friends and family.
Andrea comes to FARF with 10 years of healthcare experience specializing in nutrition support and critical care. Originally from Pennsylvania, she most recently worked at Walter Reed Military Medical Hospital in Maryland before relocating to the Pacific Northwest. Andrea is a registered dietitian and will bring this knowledge and experience to her role as Clinical Science Program Manager at FARF. She manages the FA Patient Registry, oversees the process of updating the FA Clinical Care Guidelines manual, and leads the Virtual Tumor Board to make sure individuals with FA who have a cancer diagnosis get the best possible care. “I’m excited to help make a positive impact by continuing to grow the science programs at FARF while working closely with the FA community,” Andrea says.
A die-hard Penn State football fan, when she’s not working you can catch her rooting for her team, spending time with her American Bulldog, Boh, baking, or traveling.
Michelle Watkins is 44-years-old and lives in Pittsburgh, Penn. with her husband and son. During her battle with cancer at age 32, she was diagnosed with FA. Since her FA diagnosis, Michelle has been very involved in the FA community and openly shares her story in the hopes it may help others. She currently works as a medical assistant and manages a neurology practice and infusion center. She is passionate about volunteering at health fairs and is an FA and cancer advocate. In her free time, Michelle enjoys traveling, fishing and camping with her family. She is also a diehard Pittsburgh Steelers fan.
Amy is 30 years old and lives with her fiancé, Matt in Weymouth, Mass., where she currently works as a nanny for two young boys. She was diagnosed with FA in 1995 and underwent an unrelated stem cell transplant in 2002. Recently, she was diagnosed with squamous cell carcinoma and was successfully treated. Amy has been a guest speaker at Dr. Alan D’Andrea’s class at Harvard Medical School, where she shared her experiences and perspective as an FA patient with early-stage researchers. Amy is open about sharing her story, her knowledge about growing up with FA and how it impacts everyday life. Described as positive and spunky, Amy is looking forward to bringing her perspective of living with FA to help bridge connections between patients and scientists. Amy hopes to provide her personal insight for those who are dealing with FA to know that they and their families are not alone and can live happy lives with this diagnosis.
Daniel lives with his wife and son in a small town close to Copenhagen, Denmark. He is 45-years-old and works as a pedagogical assistant at a nursery. Daniel received a bone marrow transplant in 1985 and had one oral cancer in 2014, the same year he first attended his first FA Adult Meeting. Daniel strives to be a positive role model and to show younger people with FA and their parents that there are plenty of reasons to plan for a better future for yourself or your child. FA is serious, but Daniel sees the power of using humor to make life a little bit easier. A self-proclaimed “big child”, gaming is a big passion of his. He worked in the gaming industry for years and also used it raise funds though livestreaming online games. He launched a podcast called “Life, Death, and Happiness” that featured the stories of those living with rare diseases (many guests have FA). Next on his creative endeavors is releasing a Danish rap album in May 2021. Daniel is committed to living life to the fullest and serving as an inspiration on how to live with FA in a positive way.
Csilla Krausz obtained her MD in 1990 and her specialization in Endocrinology and Metabolic Diseases in 1995 at the University of Florence, Italy; and her PhD in Human Genetics in 2001 at the Pasteur Institute/University Paris 7, France. Currently she is Professor in Endocrinology and research group leader at the University of Florence, Italy and co-director of the Florence European Academy of Andrology (EAA) Training Center in Andrology. Her first research field was spermatology with special interest in oxidative stress and functional sperm parameters. Starting from 1995 she is focusing on genetics and epigenetics of male infertility, hypogonadism, cryptorchidism, testis tumor and genomic instability of the male gamete. Her major scientific achievements concern the X and Y chromosome-linked CNVs (deletions) and their clinical significance. She is author of more than 140 scientific publications in international peer-reviewed journals and her H citation index is 43. According to a recent worldwide survey, she is among the top 20 most productive authors on male infertility research from 1995. She is an Academician of the European Academy of Andrology (EAA) and in 2014 has been elected as the President of the EAA for the period 2014- 2018. In 2017 has been appointed by the ESE as the Clinical Lead of the Reproductive Endocrinology focus area.
Dr. Balbo studies the interaction of DNA and chemicals to investigate how lifestyle and environment exposures cause disease. Her work focuses on the development of mass spectrometry-based methods for the identification and quantification of DNA addition products (called adducts) in animals and humans.
My laboratory focuses on understanding how tumor suppressor proteins function to maintain genomic integrity and suppress cancer. In particular, we focus on the hereditary breast and ovarian cancer genes, BRCA1, BRCA2 and the BRCA1-associated helicase, FANCJ (BACH1/ BRIP1). Bi-allelic loss of these genes also causes Fanconi anemia (FA), a rare chromosomal instability and cancer syndrome. Our work on FANCJ revealed that DNA repair defects underlie both hereditary breast cancer and FA. Currently, we are employing biochemical and whole-genome screening technologies, to uncover mechanisms regulating DNA repair choice and how cancer cells evade toxic chemotherapies.
Win first learned of Fanconi anemia through a chance meeting with a good friend from college. At the time, this friend was at the local medical library doing research about the ultra-rare disease with which her son had just been diagnosed. Over the 20+ years that followed, Win has participated in dozens of FARF fundraisers and has seen firsthand the incredible power of love, commitment, courage, and dedication in the FA community. Win was a practicing pharmacist for 10 years prior to moving to the medical side of the pharmaceutical industry. For the past 18 years, he has served as a Regional Scientific Director for Novartis Pharmaceuticals and is currently working for the Oncology division focusing on breast, lung, and head and neck cancers. Win lives in Richmond, VA, and in his free time, he enjoys spending time with family, doing anything outside, attending sporting events, and using his new outdoor kitchen.
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. Finally, she recently obtained 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.
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.
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 Scientific Director, Isis oversees all scientific and clinical initiatives, including the grants process, the FA registry, Virtual Tumor Board, and scientific meetings, among other duties. Isis works closely with the Board of Directors and the Scientific Advisory Board to advance FARF's scientific priorities. “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.
With extended training in pediatric hematology, oncology and stem cell transplantation, Dr. Kurre’s clinical work is focused on children with hematopoiesis failure (i.e., bone marrow failure) across a wide spectrum of inherited and acquired conditions that lead to loss of blood formation. As a physician-scientist, his clinical and scientific goals are directed at improving our understanding and broadening our treatment options for patients with bone marrow failure.
Dr. Kurre's clinical interests focus on diagnosis and treatment of bone marrow failure, specifically on improving diagnostic and therapeutic capabilities. Along with colleagues at other institutions, he is spearheading efforts to leverage molecular technologies toward the development of tests that improve diagnostic certainty and timeliness of genetic hematopoiesis failure conditions. Dr. Kurre’s laboratory has longstanding expertise in Fanconi anemia (FA), a rare inherited genetic condition with prominent hematologic complications. The long-term goal is to improve our understanding of the progressive hematopoietic failure that occurs in patients with FA. His other lab projects are focused on stem cell regulation by trafficking of extracellular vesicles in the bone marrow microenvironment.