Advocates Archives - Fanconi Cancer Foundation https://fanconi.org/people-category/advocates/ Pioneering Research for a Brighter Tomorrow. Mon, 20 Jul 2026 19:16:33 +0000 en-US hourly 1 https://wordpress.org/?v=7.0.2 https://fanconi.org/wp-content/uploads/2024/04/cropped-fanconi-favicon-32x32.png Advocates Archives - Fanconi Cancer Foundation https://fanconi.org/people-category/advocates/ 32 32 Kelsey McQueen https://fanconi.org/people/kelsey-mcqueen/ Mon, 20 Jul 2026 19:16:11 +0000 https://fanconi.org/?post_type=app_person&p=6401 Kelsey McQueen is a genetic counselor working for a patient advocacy organization in Virginia. Her younger brother was diagnosed with Fanconi anemia shortly after birth and has more recently developed complications related to Fanconi anemia neurological syndrome (FANS). Since his diagnosis, her family has been deeply engaged with FCF, contributing to fundraising and community outreach […]

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]]> Kelsey McQueen is a genetic counselor working for a patient advocacy organization in Virginia. Her younger brother was diagnosed with Fanconi anemia shortly after birth and has more recently developed complications related to Fanconi anemia neurological syndrome (FANS). Since his diagnosis, her family has been deeply engaged with FCF, contributing to fundraising and community outreach efforts. Kelsey is particularly passionate about advancing awareness and research focused on FANS to support the development of improved treatment approaches.

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]]> Karen Natalia González https://fanconi.org/people/karen-natalia-gonzalez/ Mon, 20 Jul 2026 19:13:23 +0000 https://fanconi.org/?post_type=app_person&p=6396 Karen Natalia González is 44 years old, a surgical nurse, and a mother of three—two of whom have FA. She is motivated to share our story to raise awareness about this condition and improve access to timely diagnosis, appropriate treatments, and research.

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]]> Karen Natalia González is 44 years old, a surgical nurse, and a mother of three—two of whom have FA. She is motivated to share our story to raise awareness about this condition and improve access to timely diagnosis, appropriate treatments, and research.

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]]> María Guadalupe https://fanconi.org/people/maria-guadalupe/ Mon, 20 Jul 2026 19:12:37 +0000 https://fanconi.org/?post_type=app_person&p=6394 María Guadalupe is a Mexican mother of two teenagers—Layla Quetzali and Itza Alejandra, the latter of whom lives with FA. María works as a preschool director in Mexico City. An empathetic woman who enjoys writing about feelings arising from everyday life, she is committed to supporting children—including those with Fanconi anemia—and their families in managing […]

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]]> María Guadalupe is a Mexican mother of two teenagers—Layla Quetzali and Itza Alejandra, the latter of whom lives with FA. María works as a preschool director in Mexico City. An empathetic woman who enjoys writing about feelings arising from everyday life, she is committed to supporting children—including those with Fanconi anemia—and their families in managing emotions, helping them recognize and cope with their feelings throughout the course of the illness.

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]]> Cecilia Córdoba https://fanconi.org/people/cecilia-cordoba/ Mon, 20 Jul 2026 19:11:29 +0000 https://fanconi.org/?post_type=app_person&p=6392 Cecilia Córdoba is the founder of GAAF (Argentine Fanconi Anemia Group) and a member of ALAPA (Argentine Patient Alliance). She is the mother and caregiver of the late Agustina Kaucic; she founded GAAF so that no family in Argentina would feel alone when facing the diagnosis. Since then, she has supported patients and families, disseminated […]

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]]> Cecilia Córdoba is the founder of GAAF (Argentine Fanconi Anemia Group) and a member of ALAPA (Argentine Patient Alliance). She is the mother and caregiver of the late Agustina Kaucic; she founded GAAF so that no family in Argentina would feel alone when facing the diagnosis. Since then, she has supported patients and families, disseminated reliable information, and worked to ensure access to diagnosis and treatment. GAAF is part of ALAPA, through which they jointly promote a support network and advocate for the rights of those living with rare diseases.

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]]> Allie Jones https://fanconi.org/people/allie-jones/ Mon, 20 Jul 2026 19:10:34 +0000 https://fanconi.org/?post_type=app_person&p=6390 Allie M. Jones, an individual with Fanconi Anemia from Iowa, lives life to her fullest potential. She was the first person in the world with FA to survive two bone marrow transplants in 1996, later becoming the subject of a Cornell University study. Nearly 30 years later, Allie continues to thrive by sharing her story […]

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]]> Allie M. Jones, an individual with Fanconi Anemia from Iowa, lives life to her fullest potential. She was the first person in the world with FA to survive two bone marrow transplants in 1996, later becoming the subject of a Cornell University study. Nearly 30 years later, Allie continues to thrive by sharing her story and inspiring others to live fully. She has spoken twice for Rocket Pharmaceuticals, including at the Empire State Building and Carnegie Hall for Rare Disease Day.

Allie is the owner of Soul Companion Services, where she works as a Soul Doula with training in both Birth and Death Doula fields. She also hosted a grief group for FA parents within our community. Beyond her business, Allie works two part‑time jobs—as a Job Coach for adults with Autism and at a funeral home. She fills the rest of her life with the gym, volunteer work, art, loved ones, and her beloved Vizsla, Motley Roo.

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]]> Maria Rodriguez https://fanconi.org/people/maria-rodriguez/ Wed, 30 Oct 2024 19:57:04 +0000 https://fanconi.org/?post_type=app_person&p=4585 Maria  is a business administrator with a background in pedagogy, education, and e-learning. For nearly a decade, she has taught English at a local university, where she takes pride in helping her students grow and succeed. She was diagnosed with FA at age 11. While she has not had a transplant yet,  she has lived […]

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]]> Maria  is a business administrator with a background in pedagogy, education, and e-learning. For nearly a decade, she has taught English at a local university, where she takes pride in helping her students grow and succeed. She was diagnosed with FA at age 11.

While she has not had a transplant yet,  she has lived with its symptoms most of her life. Maria is a mom of a healthy teenage boy, and an English teacher at the University in Colombia. She wants to share her experience to raise awareness and support others in the FA community, especially the emotional and financial challenges they face.

Living with FA has brought its challenges, but it has also deepened Maria’s appreciation for resilience and the power of community. She approaches her work and family life with unwavering dedication, doing her best within her limits. Her son inspires her daily to keep pushing forward, showing him that even in tough times, commitment and effort can lead to success.

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]]> Mary Eilleen Cleary https://fanconi.org/people/mary-eileen-cleary/ Wed, 10 Jul 2024 18:52:35 +0000 https://fanconi.org/?post_type=app_person&p=4395 Mary Eilleen Lyon Cleary is a communications professional and former television news anchor and journalist currently working in higher education in Michigan. With four children, her youngest diagnosed with Fanconi Anemia Neuroinflammatory Syndrome (FANS), Mary Eilleen is dedicated to bringing awareness and funding to find treatments and ultimately a cure for FA. She advocates for […]

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]]> Mary Eilleen Lyon Cleary is a communications professional and former television news anchor and journalist currently working in higher education in Michigan. With four children, her youngest diagnosed with Fanconi Anemia Neuroinflammatory Syndrome (FANS), Mary Eilleen is dedicated to bringing awareness and funding to find treatments and ultimately a cure for FA. She advocates for defeating this devastating systemic disease and its numerous complications, including cancer and neurodegeneration.

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]]> Kelly McKenna https://fanconi.org/people/kelly-mckenna/ Wed, 10 Jul 2024 18:50:46 +0000 https://fanconi.org/?post_type=app_person&p=4394 Kelly McKenna, a single mom from Ohio, is the sole caregiver for her son, who was diagnosed with FA in 2021. Driven by her persistent advocacy for her son’s diagnosis, Kelly emphasizes the importance of parents advocating for their children. She aims to increase awareness about FA among the general public, provide physicians and scientists […]

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]]> Kelly McKenna, a single mom from Ohio, is the sole caregiver for her son, who was diagnosed with FA in 2021. Driven by her persistent advocacy for her son’s diagnosis, Kelly emphasizes the importance of parents advocating for their children. She aims to increase awareness about FA among the general public, provide physicians and scientists with the caregiver’s perspective, and engage more deeply with the FA community. Kelly’s dedication to sharing her story and raising awareness motivated her to become an FA Advocate.

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]]> Ana Tabar https://fanconi.org/people/ana-tabar/ Wed, 10 Jul 2024 18:48:24 +0000 https://fanconi.org/?post_type=app_person&p=4393 Ana Tabar, 38, lives in New Jersey and was diagnosed with FA following her brother’s diagnosis in 1999. Inspired by her late brother, Ana and her family established “Un Corazón por Fanconi” to promote FA awareness and develop diagnostic protocols in the Dominican Republic. A mother and graphic designer, Ana enjoys art, warm weather, the […]

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]]> Ana Tabar, 38, lives in New Jersey and was diagnosed with FA following her brother’s diagnosis in 1999. Inspired by her late brother, Ana and her family established “Un Corazón por Fanconi” to promote FA awareness and develop diagnostic protocols in the Dominican Republic. A mother and graphic designer, Ana enjoys art, warm weather, the beach, and family time. She is dedicated to advocating for the FA community and supporting research efforts.

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]]> Sylvia Sanyanga https://fanconi.org/people/sylvia-sanyanga/ Wed, 10 Jul 2024 18:46:19 +0000 https://fanconi.org/?post_type=app_person&p=4390 Sylvia Sanyanga is a public relations professional and the Founding Trustee of The Nate Foundation, established in honor of her two children with FA. With a Master’s degree in Hospitality and Tourism, Sylvia has successfully organized fundraisers and created inclusive educational environments for FA patients. She is dedicated to making a meaningful impact in the […]

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]]> Sylvia Sanyanga is a public relations professional and the Founding Trustee of The Nate Foundation, established in honor of her two children with FA. With a Master’s degree in Hospitality and Tourism, Sylvia has successfully organized fundraisers and created inclusive educational environments for FA patients. She is dedicated to making a meaningful impact in the FA community and has received numerous awards for her advocacy work. Sylvia resigned from her full-time job in 2023 to fully devote herself to serving the FA community, planning fundraisers, and supporting families in need.

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