Advocacy Spotlight
Chiquita Hassels
Job Title: Founder and Co-Chair, Li-Fraumeni Syndrome Association Canada
After her own diagnosis of Li-Fraumeni Syndrome, Chiquita helped launch one of the first international chapters of the Li-Fraumeni Syndrome Association. She is a patient advocate and continues to work to ensure the LFS community stays connected to
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Erica Sontheimer, MS, CGC
Job Title: Patient Empowerment Program Manager, SADS Foundation
Erica supports individuals and families navigating inherited arrhythmia conditions, while advancing patient-centered access, education, and care.
Brenna Bentley, MS, CGC
Brenna Bentley, MS, CGC
Job Title: Patient and Family Advocate, United MSD Foundation
Brenna supports families worldwide affected by Multiple Sulfatase Deficiency and has helped lead biobank development, family onboarding, and advocacy initiatives.
Kathy Baker
Job Title: Founder and Executive Director, My Faulty Gene
Kathy founded My Faulty Gene, a non-profit dedicated to funding genetic testing, promoting education, and encouraging cascade testing.
Katie Garbarini, MS, CGC
Job Title: Clinical Programs Director, Alliance to Cure Cavernous Malformation
At the Alliance to Cure Cavernous Malformation, Katie leads a growing network of multidisciplinary centers focused on care, while working to expand access to genetic testing for the CCM community.
Cindy Gavin
Job Title: CEO and Co-Founder, Let’s Win Pancreatic Cancer
Let’s Win Pancreatic Cancer is a vital resource for guiding patients and caregivers with up-to-date knowledge about pancreatic cancer.
Karen Merritt
Job Title: Patient Advocate for Universal DPD/DPYD Testing
Karen is a founding member of the Advocates for Universal DPD/DPYD Testing, an organization focused on promoting mandatory pretesting to prevent chemotherapy-induced fatalities.
Kristin McJunkins
Job Title: Director of Advanced Degree Applications/STEM Career Advising, Yale University
After a personal diagnosis of melanoma, Kristin found purpose in advocacy organizations including the Melanoma Research Foundation and Friends of Cancer Research.