Season 6, Episode 7: In Conversation with Dr. Reem Eissa & Mary Irwin About Reem: Dr. Reem Eissa is the founder of The Fight Farber Foundation, a clinical psychologist, and a devoted mother whose life was forever changed when her son, Zayd, was diagnosed with Farber disease. What began as a mother’s search for answers for her child quickly became a mission driven by love, urgency, and hope.With a professional background in clinical psychology and a deep understanding of child development, Reem brings both clinical insight and lived experience to the rare- disease space. As Zayd’s mother, she has walked the uncertainty, fear, and isolation that accompany a diagnosis few physicians ever encounter. Confronted with limited research and a lack of coordinated support, she realized families needed more than information, they needed advocacy, connection, and action.Zayd’s diagnosis became the catalyst for founding The Fight Farber Foundation. Reem co-created the foundation with her loving husband, Emad, to accelerate research, raise awareness, and build a compassionate community so that no family faces Farber disease alone. At its core, the foundation exists to honor Zayd’s journey and to fight for every child and family impacted by this devastating condition.She can be found on social media @hopefor_zayd on TikTok and Instagram, where she shares snippets of daily life with Farber Disease. Where to find Reem?: @hopefor_zayd FightFarber.com FightFarber@gmail.com About Mary: Mary Irwin is the board president of a 501(c)(3) charity known as SMA-PME Research and a devoted family member whose life was forever changed when her grandniece, Adeline, was diagnosed with SMA-PME. What began as a family’s search for answers after years of unexplained symptoms quickly became a mission driven by love, urgency, and hope. With a deep understanding of the challenges that come with rare disease, Mary brings both personal experience and advocacy to the rare disease space. As Adeline’s aunt, she witnessed the uncertainty, fear, and isolation that accompanied a diagnosis few physicians ever encounter. After it took eight years for Adeline to receive a diagnosis, Mary saw firsthand the urgent need for research, awareness, and support for families affected by SMA-PME. Adeline’s diagnosis became the catalyst for Mary’s involvement in SMA-PME Research. After learning that more research funding was needed, Mary formed the charity in February 2022 to help support research and make progress toward a better future for those affected by SMA-PME. At its core, the organization exists to honor Adeline’s journey and to fight for every family impacted by this rare disease. Where to find Mary?: https://sma-pme.org/ Special Note, about: "Tadpole Summer" by Catherine Bruton, as mentioned in the episode: https://www.amazon.com/dp/1839946520?lv=shuf&bestFormat=true&social_share=cm_sw_r_ffobk_cp_ud_dp_SNRJK8DRH358R6784TYH&channelId=704&ref_=cm_sw_r_ffobk_cp_ud_dp_SNRJK8DRH358R6784TYH&plpRedirect=mhFallback
