Zar Toolan

Board of Directors - Board Member

Zar Toolan

Zar Toolan leads Wealth Platforms, Data & Artificial Intelligence and serves on Edward Jones' Operating Committee. Prior to joining Edward Jones in 2020, Zar spent many years as an executive with Wells Fargo Advisors, most recently as managing director and head of Advice and Research. Earlier in his career, Zar worked as a nuclear engineer and operations manager for the United States Navy. He holds an MBA in finance from the College of William & Mary and a bachelor's degree in mechanical engineering from Columbia University, where he was an All-Ivy League rower.

Zar loves seeing the country on foot and has completed more than 65 marathons and ultra-marathons in 35 different states and three continents, including qualifying for the Boston Marathon multiple times. He and his "Team Bravery" teammates have also run, biked, and kayaked across multiple states to raise funds and awareness for FARF in honor of his niece, Avery, who lives with FA, and thousands more like her.

Zar and his wife, Liz, and their two children, Maeve and Finn, live in St. Louis, Missouri, where he serves on the board of several nonprofits, including the St. Louis Science Center, Seed St. Louis, University of Missouri–St. Louis' DEI Accelerator, and the Greater St. Louis Marathon.


Adam Becker

Board of Directors - Board Member

Adam Becker

Adam and his wife Marissa joined the Fanconi anemia "FAmily" in 2015, when their then-four year old son, Zachary, was diagnosed with FA. Adam and Marissa live in Brooklyn, NY with Zach, his older brother Ben, and their furry feline brother Carl.

Professionally, Adam has made a career of helping good teams scale, first as a management consultant at Accenture and IBM, and for the last 15+ years at a variety of SaaS startups. More often than not, those companies had a "double bottom line": they were for-profit, while they also sought to improve our global and local communities by promoting recycling, connectedness, and sustainability. He is currently the VP of Services for Digimarc, a services and software provider.


Louise Dalgleish

FAdult Council

Louise Dalgleish

Member
FAdult Council

Louise is a 22-year-old British photographer who was diagnosed with FA at age six. She works as a freelance photographer as well as market worker, drag king and nightclub safeguard. Experimenting mainly with documentary photography, she is interested in the formation of community. Louise is part of a drag collective where she runs community workshops to bring marginalized communities together.

Eleven years post-transplant, Louise has experienced many interactions where she’s been considered 'incapable' due to having the 'patient' or life-limiting illness' labels which others often don't see beyond. Louise acknowledges the low expectations from outsiders who may view FAdults solely as patients, when realistically, every FAdult has ambitions and faces many of the same issues people without FA experience. She’s interested in working with clinicians to understand how to improve patient experience.

Louise shares the understanding of extra barriers in FAdults’ lives and the resilience they embody alongside it. She welcomes others to share their experiences.


Lexi Marshall

FAdult Council

Lexi Marshall

Member
FAdult Council

Lexi is a 2016 graduate from MIT where she studied mathematics and chemistry. She was also a pitcher on the MIT softball team that finished 5th in Division III and holds school records in strikeouts and wins. She remains in Boston where she works as a pension actuary for a consulting firm.

She was diagnosed with FA in 2020 after going into bone marrow failure. She considers herself lucky to have responded very well to Danazol which enabled her to avoid what was looking like an imminent stem cell transplant.

Lexi is passionate about patient education and self-advocacy. She attended the FA Adult Retreat in 2022 for the first time and took the opportunity to listen to the Scientific Symposium sessions as much as possible and considers that to be the most empowering experience since her diagnosis.


Evan Connelly

FAdult Council

Evan Connelly

Member
FAdult Council

Evan is 21-years-old and lives in Milwaukee, Wisconsin, where he studies Chemical and Biomolecular Engineering at the Milwaukee School of Engineering. He has five sisters, one of whom also has Fanconi anemia. He was diagnosed at six-weeks-old, has not needed a transplant, and remains happy and healthy.

Evan attended Camp Sunshine for many years, from childhood into adulthood, and attended every FA adult meeting beginning in 2019. A scientist and researcher himself, Evan is always willing to participate in research.

He enjoys playing piano, 3D printing, technology, building and fixing computers, coding, learning about science, and cats.


Blue Mohr

FAdult Council

Blue Mohr

Member
FAdult Council

Blue is a 26-year-old nonbinary German-American with FA. They are currently attending George Washington University to pursue a Master's degree in Public Health, with a focus on Public Health Marketing and Communication, and a secondary focus in Community-Oriented Primary Care and Cancer Epidemiology. They lived in Texas for 25 years before moving to D.C. They are still pre-transplant, and adore reading, cats, and creative hobbies!


Sam Volchenboum

University of Chicago

FA Research Projects

Taylor Tidd

FA Research Fund - Community Support Program Manager

Taylor Tidd

Born and raised in Boise, Idaho, Taylor graduated from the University of Utah with a degree in Biology and minors in Chemistry and Business. Prior to joining FARF, she worked in diverse clinical settings and volunteered with programs that provided resources to underserved populations.

With a passion for event planning and a love for people, Taylor is excited to combine her skills and interests to serve the FA community. In her role as Community Support Program Manager, Taylor manages and coordinates community support programs, helping to facilitate connections, providing access to resources, and supporting individuals and caregivers who are impacted by FA.

In her free time, she enjoys reading, hiking, and spending time with her furry companion, Waffles.

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Ramon Garcia Escudero

Researchers

Ramon Garcia Escudero

Research Institute of the Hospital 12 de Octubre

FA Research Projects


Lauren Kennedy

FARF Staff - Philanthropy Director

Lauren Kennedy

Lauren joined the FARF team in 2023, bringing over 15 years of experience in the nonprofit sector. She is a graduate of Miami University and began working for The Leukemia & Lymphoma Society (LLS) following graduation. There, she focused on growing the annual fundraising program as well as the corporate giving program. After nearly a decade at LLS, she continued her career at Juvenile Diabetes Research Foundation, where she led the development program, with a special focus on community engagement.

Lauren will lead the fundraising team at FARF. She is most looking forward to connecting with families to help share their powerful stories to make an impact. Lauren is thrilled to be supporting this amazing organization.

Outside of her work with FARF, Lauren enjoys spending quality time with her husband and two small children.

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Hanneke Takkenberg, MD, PhD

Erasmus University Medical Center - Professor of Clinical Decision Making in Cardio-Thoracic Interventions

Hanneke Takkenberg

Dr. Takkenberg has been an active Fanconi anemia (FA) volunteer since 2010, after her third daughter was diagnosed with FA in 2008 and survived her stem cell transplant in 2009. She leads the Dutch FA working group and together with Bob Dalgleish (Fanconi Hope, UK), heads FA Europe. This is an initiative that connects FA patients and professionals across Europe with the aim to achieve equal access to optimized care across Europe for people affected by FA.

Dr. Takkenberg brings to the board a European perspective on FA and expertise in clinical decision making and patient engagement as a Professor of Clinical Decision Making in Cardio-thoracic Interventions at the department of Cardio-Thoracic Surgery of the Erasmus MC in Rotterdam, The Netherlands. She is a strong promotor of equal opportunities, diversity & inclusion through her work as Professor of Management Education and Executive Director of Erasmus Centre for Women and Organizations at Rotterdam School of Management at Erasmus University Rotterdam.


Will Bloxom

Board of Directors, FAdult Council

Will Bloxom

Will is a 30-year-old from Salisbury, Maryland, where he works remotely in data operations management. He was diagnosed with Fanconi anemia in 1997 at age 5 and was transplanted in 2020 during the height of the COVID pandemic at Sloan Kettering Memorial Hospital in New York.

He attended Camp Sunshine sporadically as a child and began attending FA Adult meetings in 2017. Will is almost always willing to partake in clinical trials and in 2015 was a participant in the phase 1 gene therapy trial for FA patients at the Fred Hutchinson research center. He is also a volunteer with Be The Match, the national stem cell donor registry, where he assists his local representative.

Outside of all things medical, Will enjoys gaming, dogs and traveling the world.


Fatma Issak

FAdult Council

Fatma Issak

Member
FAdult Council

Fatma was born in Oslo, Norway. At the time, doctors were unaware of her condition. Only five years later did they understand she was facing major health complications. Due to insufficient medical knowledge in her home town, Fatma's family traveled to London, Berlin, and Mumbai, before finally finding doctors who could help in New York City at Memorial Sloan Kettering. Fatma's treatment began immediately, with the miracle stem cell donor being her grandmother.

"I consider myself lucky to have made it this far, and I feel that I am now at a stage in life where I can dedicate more of my time to the Fanconi anemia community."


David Rodwell

FAdult Council

David Rodwell

Member
FAdult Council

David is 30 years old and lives in Sydney, Australia. He was first diagnosed with Fanconi anemia in 1994 and had a successful bone marrow transplant in 2004. He has since gone on to become a qualified lawyer working for the New South Wales state government in Australia. In his spare time, David loves watching movies, reading, traveling and going to the beach.

"I want to give back to the FA community using my life experience and professional expertise. The unique FA community is very special and I feel ready to step up and be more involved in the community, and a role model for younger people with FA."


Andie Kalemba

FAdult Council

Andie Kalemba

Member
FAdult Council

Andie Kalemba is a 19-year-old college student at Butler University. From St. Johns, Indiana, she was diagnosed with Fanconi anemia at 8-months-old and received a bone marrow transplant at age five at Cincinnati Children's Hospital. She works on her campus with the University Program Council. Andie loves her family and friends, her dogs, art, theatre, and helping raise awareness about FA.


Dexter Sherrell

FAdult Council

Dexter Sherrell

Member
FAdult Council

Dexter was first diagnosed with Fanconi anemia at age 45, and received a transplant at Memorial Sloan Kettering in August 2021. Despite low white blood counts through late childhood into early adulthood, Dexter was able to serve in the United States Air Force. After his military service, he worked in the manufacturing industry for a number of years. He then pursued his degree in Business Administration and Ministry Leadership, and eventually transitioned into the business world. He now owns and manages his own businesses.

Dexter enjoys encouraging others, helping them overcome challenging obstacles, and sharing about his faith and health journey through ministry and speaking engagements. He's a proud descendant of Creek nation through his mother. His dream has always been to fly an airplane and to skydive, two goals he is currently pursuing! He lives in Georgia with his wife of 22 years, Mandy.


Kim Woodrow, PhD

Researchers

Kim Woodrow

University of Washington

FA Research Projects


Daniel Johnson

Daniel Johnson

University of California - San Francisco

FA Research Projects

Jenny Grandis

Jenny Grandis

University of California - San Francisco

FA Research Projects

Michael Wilson, MD

Researchers

Associate Professor
University of California - San Francisco

FA Research Projects


Prashanth S Ramachandran, MBBS

Researchers

Prashanth S Ramachandran

Assistant Professor
University of California - San Francisco

FA Research Projects


Brettany Frederick

FA Research Fund - Marketing Manager

Brettany Frederick

Brettany moved to Eugene to attend the University of Oregon, where she majored in General Science with minors in Biology and Chemistry. She then continued her education to obtain certification as a surgical technologist and practiced the profession for several years. While pursuing these degrees, Brettany developed her skills as an illustrator and graphic artist. She published an educational children’s science book during her undergraduate degree.

Brettany brings to FARF her devotion to help people, her creativity, and her love of science. She began her time at FARF in 2021, working closely with fundraisers and community members to organize and optimize their fundraising efforts. In 2023 expanded her marketing skills in other areas of the organization, spreading FARF's mission and work through social media, email marketing, and publications.

An Oregon native, Brettany loves to be outdoors, go on camping trips, and she'a a major animal lover.

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Carmem Bonfim, MD

Board of Directors - Board Member

Carmem Bonfim

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.


Pedro Ravelo

Board of Directors - Treasurer

Pedro Ravelo

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.


Jess Stafford

FA Research Fund - Executive Assistant

Jess Stafford

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 all things administration and organizational development. As Executive Assistant, she is the smiling face behind the scenes who ensures our team is always set up for success. In addition, Jess supports senior leadership, processes all gifts and pledges, generates acknowledgements and tax receipts, and works closely with accountants to track finances.


A true Oregonian, Jess loves exploring the outdoors with her family. She's a big track and field fan and is a self-proclaimed comic book nerd.

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Paula Rio, PhD

Scientific Advisory Board

Paula Rio

Head of the Bone Marrow Aplasias Unit at the Biomedical Innovation Unit
CIEMAT/CIBERER/IIS-FJD, UAM
Madrid, Spain

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.

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Laura Hefner

FA Research Fund - Research Program Manager

Laura Hefner

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 and Clinical Care Guidelines updating 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.

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Rosie Holcomb

FA Research Fund - Development Officer

Rosie Holcomb

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.

Rosie started at FARF in 2021 as Family Services Program Manager at FARF. In that role, Rosie assisted caregivers and individuals affected by FA by organizing meaningful events, creating support and educational resources, and providing direct support along the FA journey. In 2023, Rosie stepped into fundraising for the organization as Development Officer. In this role, she supports the organization by working closely with donors, managing fundraising events, strengthening fundraising programs, and exploring opportunities to advance FARF's mission.

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.

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Andrea Ronan

FA Research Fund - Advocacy and Engagement Manager

Andrea Ronan

Andrea joined the FARF team in 2021, bringing more than 10 years of healthcare experience specializing in nutrition support and critical care. Originally from Pennsylvania, she worked at Walter Reed Military Medical Hospital in Maryland before relocating to the Pacific Northwest.

As Advocacy and Engagement Manager, Andrea is responsible for managing community programs that relate to clinical support and research advocacy for the Fanconi Anemia Research Fund. She oversees the community clinical programs, the Fanconi Anemia Registry and the Virtual Tumor Board, to make sure individuals with FA who have a cancer diagnosis get the best possible care. She also manages the Research Advocacy Program to help amplify the voices and lived experiences of the FA community.

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.

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Michelle Watkins

Michelle Watkins

Member
FA Adult Council

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 Vangel

Amy Vangel

Member
FA Adult Council

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 Kold

Daniel Kold

Member
FA Adult Council

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, MD, PhD

Csilla Krausz

Fundacio Puigvert

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.

FA Research Projects

Silvia Balbo, PhD

Silvia Balbo

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.

FA Research Projects

Kathryn Pennington

Kathryn Pennington

Branden Moriarity

Branden Moriarity

University of Minnesota

FA Research Projects

Sharon Cantor, PhD

Researchers

Sharon Cantor

Associate Professor
University of Massachusetts Medical School

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.

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FA Research Projects


Win Gouldin, PharmD

Board of Directors - Vice-President

Win Gouldin

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.


Christine Krieg

Researchers

Christine Krieg

Executive Director
Deutsche Fanconi-Anämie-Hilfe e.V.

FA Research Projects


Ana Alejandra Tabar

Ana Alejandra Tabar

Member
FAdult Council

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

FAdult Council

Egil Dennerline

Member
FAdult Council

Egil Dennerline is a 49-year-old Danish-American poet and singer/songwriter who lives with FA. Since his first cancer in 2011 (he has been diagnosed 11 times, as of 2023), 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 five studio albums; most recently the follow-up album “Respite," with his newest band, Wall to Wall. Egil also works as a freelance film producer (FA permitting) and most recently produced his second feature film. He lives in Denmark with his wife and daughter. He recently received a bone marrow transplant and is focused on recovery.


Alexander LaVake, MPH

Alexander LaVake

Research Program Manager
FA Research Fund

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.

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Amelia Hawkshaw

Amelia Hawkshaw

Member
FAdult Council

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 Bedoya

Angela Bedoya

Member
FAdult Council

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 Timperley

Jack Timperley

Member
FAdult Council

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 Johnson

Mary-Beth Johnson

Member
FAdult Council

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 Bennetsen

Board of Directors - Board Member

Jasmine Bennetsen

Jasmine is 31-years-old and currently lives in California. 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 formerly served as co-chair of the FAdult Council, an advisory council formed in 2019 to advocate for and represent the growing adult FA population. A professional photographer, Jasmine put her skills to use working for Apple as a camera engineer 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 the 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."


Matthew Pearl

Matthew Pearl

Member
FAdult Council

Matthew Pearl is a 26-year-old individual with Fanconi anemia and patient advocate. He serves in various capacities on several nonprofits, including the Fanconi Anemia Research Fund (FARF), the Rare Action Network (RAN), the National Organization for Rare Disorders (NORD), and the National Ability Center (NAC). He is on the board of directors for both the Utah Rare Disease Advisory Council (RDAC) and The Professional Ski Instructors of America – American Association of Snowboard Instructors Intermountain. Matthew obtained a bachelor's of science degree from Westminster College, MO with a major in Leadership Consulting in Organizations and minors in Social and Personality Psychology and Nonprofit Management. Matthew attended the Dana Farber Cancer Institute at Harvard as the first patient with FA to research FA.

Duncan Nunes

Duncan Nunes

Member
FAdult Council

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 Strimling

Board of Directors - Board Member

Tracy Strimling

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 Deines, LCSW

FA Research Fund - Community Programs Director

Jordan Deines

Jordan received her bachelor’s degree in psychology, then went on to earn her master’s in social work, followed by her license in clinical social work. In previous roles, Jordan worked with families and survivors of trauma in a hospital setting.

She joined the FARF team in 2019. As the Community Programs Director, Jordan oversees all of FARF’s patient and caregiver program initiatives. She works closely with FA patient and caregiver advocates and FA experts to develop resources that promote wellbeing and foster community care for those impacted by FA.

"I'm honored to serve on a team that promotes and aids access to education and support for FA individuals and caregivers in ways that ultimately empower them to become the primary drivers of FA research.”

In her free time, Jordan enjoys many outdoor adventures with her family, including hiking, camping, snow sports, and water sports. She’s also an avid traveler, having visited 21 countries and counting!

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Barbara Burtness, MD

Researchers, Scientific Advisory Board

Barbara Burtness

Professor of Medicine
Yale Cancer Center

Dr. Barbara Burtness is Professor of Medicine at the Yale University School of Medicine, Interim Associate Cancer Center Director, Diversity, Equity, and Inclusion; Disease Aligned Research Team Leader, Head and Neck Cancers Program; Co-Leader, Developmental Therapeutics, Yale Cancer Center; and Director of the Yale Head and Neck SPORE. She chairs the ECOG-ACRIN Head and Neck Cancer Therapeutics Committee, which conducts multicenter trials of novel treatment paradigms to improve the survival and functional outcomes of patients with all stages of head and neck cancers. She has conducted numerous phase I–III investigator-initiated trials. Dr. Burtness’ research focuses on translational studies in head and neck cancer, including biomarkers of resistance to EGFR inhibition and synthetic lethal approaches for Fanconi Anemia-related head and neck cancer.

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FA Research Projects


Jordi Minguillón, PhD

Researchers

Jordi Minguillón

Postdoctoral Researcher
Universitat Autónoma de Barcelona
Barcelona, Spain

FA Research Projects


Adam Nelson, MBBS, FRACP

Researchers

Adam Nelson

Member, Division of Bone Marrow Transplantation and Immune Deficiency; Assistant Professor, UC Department of Pediatrics
Cincinnati Children's Hospital Medical Center
Cincinnati

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FA Research Projects


Lindsey Romick-Rosendale, PhD

Researchers

Lindsey Romick-Rosendale

Director, Metabolomics Core Facility, Mass Spectrometry Laboratory, Division of Pathology and Laboratory Medicine
Cincinnati Children's Hospital Medical Center
Cincinnati, OH

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FA Research Projects


Mathieu Sertorio, PhD

Researchers

Mathieu Sertorio

Cincinnati Children’s Hospital Medical Center
Cincinnati

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FA Research Projects


Yi Zheng, PhD

Researchers

Yi Zheng

Director, Experimental Hematology and Cancer Biology, Institute Co-Director, Cancer and Blood Diseases Institute
Cincinnati Children’s Hospital Medical Center
Cincinnati

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FA Research Projects


Julia Wong

FA Research Fund - Associate Director of Events

Julia Wong

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. Julia graduated with a degree in Business Administration with a concentration in marketing.

She joined FARF in 2019 as Family Fundraising Program Manager, supporting FA families in their fundraising efforts for the organization. While in this role, she helped increase overall fundraising efforts and dollars, which held strong even during the pandemic. In 2022, Julia started a new role at FARF, combining her organizational and event experience to serve as the Associate Director of Events. She oversees all events across the organization, working with research, family services, and administrative teams to develop and carry out successful in-person and virtual events.

In her free time, you can find Julia at her local Crossfit gym, playing pickle ball or hiking the nearest mountain.

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Joyce Owen, PhD

Board of Directors - Director Emeritus

Joyce Owen

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.


Melissa Haendel, PhD

Scientific Advisory Board

Melissa Haendel

Professor and Chief Informatics Officer
University of Colorado

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.

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Kathryn Pennington, MD

Researchers, Scientific Advisory Board

Kathryn Pennington

Faculty Member in Gynecologic Oncology
University of Washington

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.

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FA Research Projects


Jeffrey Siegel, MD

Jeffrey Siegel

Executive Director, Translational Medicine, Inflammation Clinical Research
Gilead Sciences

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 Grandis, MD

Scientific Advisory Board

Jennifer Grandis

Professor in the Department of Otolaryngology – Head and Neck Surgery
University of California, San Francisco

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.

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Lisa Mingo, CPA, CPHR

Board of Directors - President

Lisa Mingo

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.


John Connelly

Board of Directors - Secretary

John Connelly

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.


Kevin Haworth, PhD

Researchers

Kevin Haworth

Post-Doctoral Research Fellow
Fred Hutchinson Cancer Research Center

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.

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FA Research Projects


Agnieszka Czechowicz, MD, PhD

Researchers

Agnieszka Czechowicz

Pediatric Hematology-Oncology
Stanford University

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.

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FA Research Projects


Georgios Karras, PhD

MD Anderson
Houston

FA Research Projects

Isis Sroka, PhD

FA Research Fund - Chief Scientific Officer

Isis Sroka

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.

She joined the FARF team in 2018. As Chief Scientific Officer, Isis oversees all scientific and clinical initiatives, including all research grants and the development of an FA Cancer Consortium. She works closely with the Board of Directors and the Scientific Advisory Board to advance FARF's scientific priorities, with a major focus on advancing FA cancer research. She led the development of the 2020 FA Clinical Care Guidelines, the standard of care for FA diagnostics and disease management.

In her free time, Isis enjoys running and exploring the many nature trails in Oregon with her husband and three children.

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Aileen Carlos, JD

Aileen Carlos

Board Member
Board of Directors

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.

Yigal Dror, MD

Researchers

The Hospital for Sick Children
Toronto, Canada


Yan Xie, MD

Researchers

Hubei University of Medicine
Hubei, China

FA Research Projects


William Fleming, MD, PhD

Researchers

Oregon Health & Science University
Portland, USA

FA Research Projects


Wei Tong, PhD

Researchers

Wei Tong

Children's Hospital of Philadelphia
Philadelphia, USA

FA Research Projects


W. Clark Lambert, MD, PhD

Researchers

New Jersey Medical School
Newark, USA

FA Research Projects


Vincent van Beusechem, PhD

Researchers

VU University Medical Center
Amsterdam, Netherlands

FA Research Projects


Uma Lakshmipathy, PhD

Researchers

University of Minnesota Medical School
Minneapolis, USA

FA Research Projects


Toshiyasu Taniguchi, MD, PhD

Researchers

Fred Hutchinson Cancer Research Center
Seattle, USA

FA Research Projects


Thomas Hollis, PhD

Researchers

Wake Forest University School of Medicine
Winston-Salem, North Carolina

FA Research Projects


Thomas Glover, PhD

Researchers

University of Michigan School of Medicine
Ann Arbor, USA

FA Research Projects


Susan Rose, MD

Researchers

Susan Rose

Cincinnati Children's Hospital Medical Center
Cincinnati, USA

FA Research Projects


Susan Olson, PhD

Researchers

Oregon Health & Science University
Portland, USA

FA Research Projects


Suk-Hee Lee, PhD

Researchers

Indiana University School of Medicine
Indianapolis, USA

FA Research Projects


Sue Richards, PhD

Researchers

Oregon Health & Science University
Portland, USA

FA Research Projects


Stephen West, PhD

Researchers

London Research Institute
London, United Kingdom

FA Research Projects


Spencer Collis, PhD

Researchers

Cancer Research UK
London, United Kingdom

FA Research Projects


Simon Boulton, PhD

Researchers

Cancer Research UK
London, United Kingdom

FA Research Projects


Shobbir Hussain, PhD

Researchers

University of Cambridge
Cambridge, United Kingdom

FA Research Projects


Sara Fagerlie, PhD

Researchers

Fred Hutchinson Cancer Research Center
Seattle, USA

FA Research Projects