A Letter from Our Founder
This October has been a month of sharing our journey and making strides in raising awareness for LCC/Labrune Syndrome, filled with meaningful events, exciting collaborations, and fresh opportunities.
One of the highlights was attending the *National Organization for Rare Disorders (NORD) Summit* in Washington, DC, with my mom, Belinda. Before the summit, we connected with Dr. Jamie Fraser, who shared important updates and guided us on who to connect with during the event. Dr. Fraser’s insights were invaluable, helping us open doors to potential collaborations and new connections within the rare disease community.
Earlier in the month, we spoke with two second-year medical students, sharing our experiences with the LCC/Labrune diagnostic journey and emphasizing the role of awareness in early diagnosis and research. Connecting with the team at GeneDx was another key moment, allowing us to discuss the vital impact genetic testing has on rare diseases.
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Attending the *Week in Rare – Global Genes Conference* in Kansas City, MO, brought together a powerful network of advocates, scientists, and families dedicated to rare disease awareness and research. We also attended a Scientific Symposium hosted virtually by a startup organization in Canada, gaining fresh insights into the latest advancements in rare disease science.
Closer to home, we connected with physician-scientists at Washington University in St. Louis, where we’re excited about potential collaboration on LCC/Labrune research efforts. Making these connections has been an essential part of our goal to raise awareness and expand research possibilities for our rare disease community.
Throughout October, we also connected with organizations focusing on similar diseases, sharing insights and strategies to support those affected by rare diseases. We created a community sign-up form to connect with more patients and families interested in staying informed and involved in future initiatives.
October has brought tremendous momentum and hope for what’s ahead. Stay tuned for more exciting updates—and Happy Halloween! Thank you for being part of this journey with us!
WITH LOVE + HOPE
Ashley
Patient Spotlight
Victoria
Paciente destacado: el recorrido de Victoria con síndrome de Labrune/LCC
A los 11 años, Victoria irradia energía y positividad. Sus días están llenos de música, baile y canto, expresiones de su espíritu inagotable. Pero su verdadero amor es la gimnasia, una actividad que practica desde pequeña. ¿El sueño más cercano a su corazón? Algún día competir en una competencia de gimnasia, mostrando la fuerza y la habilidad que tanto le costó desarrollar. Para Victoria, el movimiento es una fuente de alegría y libertad, una forma de celebrar la vida todos los días.