MED13L Foundation

Hello Reader, This year’s theme, Make Every Story Count, drives us forward. From Rare Disease Day to now, your impact stories on social media and data contributions (via RARE-X and Simons Searchlight) are building community and unlocking the mysteries of MED13L. We celebrate the growing global movement—leaders organizing in new countries to ensure no family stands alone. Whether you walk with us or alongside us, we are stronger together. Today, we honor you, MED13L families, and all you do....

February, 2025 Hello Reader, We’re so excited to invite you to the MED13L Family & Research Meet-up in Waltham, MA, happening July 9th–13th! We are also so excited to announce the meeting is co-hosted with our good friends at CTNNB1 Connect and Cure. Think of it as a mash-up of science, support, and community—where families, researchers, and clinicians come together to learn, connect, and make a difference. Whether you’re sharing stories, swapping ideas, or just soaking it all in, this is one...

December 31, 2024 Dear Reader As we close out 2024, we invite you to share our excitement for what lies ahead for our MED13L community. Because of your past support, we have big plans for 2025. Planning for the 2025 Research and Family Conference is nearly complete, and we look forward to welcoming as many of you as possible! More research is urgently needed to better understand MED13L and to search for treatments that will improve the quality of life for all those affected by the syndrome....

December , 2024 Dear Reader For some, 2024 was a year of excitement, quality family time and learning. For others, especially those in our community who recently received a diagnosis for a loved one, it was a year of uncertainty and perhaps even fear. Because of your past support, the MED13L Foundation has been there all year for everyone in our community. Your gives have turned into resources like support group sessions, online community support and the funding of several promising research...

October, 2024 Hello Reader, Conferences, Conferences, Conferences! The MED13L Foundation has been busy! From attending Global Genes in Kansas City to presenting our Strategic Research Roadmap in Boston, and now planning the 2024 Virtual Research Meeting and 2025 In-Person Family and Research Meet-Up—there’s so much happening! Read on to learn about the exciting research readiness tools we discovered at these conferences and the opportunities for you to dive deeper into MED13L research and...

September, 2024 Hello Reader, As we welcome September, a month dedicated to Self-Care Awareness, we want to emphasize the importance of taking care of those who care for others. At the MED13L Foundation, we recognize the incredible dedication and resilience of parents and caregivers in our community. This issue is devoted to providing you with valuable resources, such as the Global Genes RARE Concierge Support, our monthly support group, and other tools designed to support your well-being....

August, 2024 Hello Reader, As the summer draws to a close, we prepare for the transition back to school or a return to more structured routines. This time of year can evoke a wide spectrum of emotions for our families, from excitement to anxiety, and everything in between. We stand in solidarity with all our caregivers as we navigate this transition together. We are excited to share the news of the extension of the research grant awarded to Dr. Randy Strich at Rowan University for his work to...

July, 2024 Hello Reader, Last month, the MED13L Foundation's board met and voted to elect Katie Boychuck as Chair. Katie has served as a Board Member and Treasurer for the past two years and has also played many roles within the Foundation, from supporting fundraising efforts to welcoming new members to our community. As Chair, Katie Boychuck's goal is to work every day to move the ball closer to a treatment or a cure for MED13L while providing support to our community. Her favorite part of...

June, 2024 Hello Reader, We sincerely thank all those who participated in World MED13L Day and extended the celebration throughout the entire month of May for MED13L Awareness Month. Our community continues to grow thanks to your awareness campaign contributions, while our research and outreach projects keep expanding due to your fundraising efforts. MED13L Awareness Month was a success because of all of YOU! We are thrilled to report that our preliminary fundraising efforts raised just shy...