Welcome
We’re glad you found us
Welcome to the MED13L Foundation, a beacon of hope for families navigating the complexities of the MED13L Syndrome (Q87.85) diagnosis. We’re a nonprofit organization at the intersection of family, hope, and research.
We are driven by the passionate commitment of families impacted by MED13L Syndrome and the dedicated researchers who stand with them. Our core mission is to provide a warm and supportive community for those navigating a MED13L diagnosis.
Who We Are
Our Story
Our story began with the shared experiences of parents determined to seek answers, create connections, and forge a path towards a brighter future for their children.
Grounded in the spirit of community, we unite families, researchers, and advocates to facilitate breakthroughs in understanding MED13L. Our commitment is to provide support, raise awareness, and catalyze research efforts that aim not just at treatment, but at a comprehensive cure.
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#MED13Lfoundation
Mission & Values
What we do, and why?
At the heart of our mission lies the crucial objective of understanding the MED13L gene and its intricate role in MED13L syndrome. Collaborating closely with the global scientific community, we are dedicated to unraveling the mysteries of this gene. With every research endeavor, we inch closer to not just effective treatments but a complete cure for MED13L syndrome.
Our coordination with researchers and scientists ensures that the brightest minds are working together and sharing valuable insights.
It’s essential for the medical community and the public to be aware of and understand the complexities of MED13L syndrome. An informed doctor or medical professional can make a significant difference in the early diagnosis, treatment, and management of the disorder. By focusing on educating these professionals, we aim to elevate the standard of care and improve the lives of those with MED13L syndrome.
When we amplify the stories, challenges, and triumphs of those affected, we not only garner support but also build a compassionate and informed society.
Knowledge is power, especially when faced with the challenges of a rare disorder. We strive to offer comprehensive educational resources for patients, caregivers, and loved ones. By providing the latest information, research findings, and expert insights, we empower the MED13L community to make informed decisions and better navigate their journey.
Achieving our goals requires more than dedication and hard work; it also requires funding. Our fundraising initiatives are pivotal in driving our mission forward. With each dollar raised, we can support more research, educate more individuals, and provide greater assistance to the MED13L community.
Our fundraising efforts are a testament to the collective power of community and the tangible impact we can make when we unite for a cause.
United by Heart
We’re on a deeply personal mission.
Each member of our board carries a profound and personal connection to the mission we champion. The Med13L Foundation is more than just an organization or a cause for them; it’s a personal journey intertwined with the hopes, dreams, and well-being of their own children. This deeply-rooted commitment ensures that every decision made, every program launched, and every research endeavor supported is fueled by genuine understanding and an unwavering desire to make a difference.
Advancing Discovery
Our scientific and medical advisory board is consistently expanding.
Our Scientific Advisory Board is perpetually on the lookout for fresh perspectives, innovative approaches, and emerging expertise. Recognizing that scientific advancement thrives on collaboration and diverse thinking, the board actively seeks to invite new members who can bring novel insights to the table.
A Message From the Founder
Our family’s MED13L journey started in 2016 with feelings of loneliness and desperation while we spent many nights searching websites with only a list of symptoms. One piece of advice was provided from the doctor… find other families, connect with them, and learn about MED13L together. The immediate feeling was that finding families like us was navigating the impossible.
Today our future looks much brighter, the vision is clearer, and my hope for my sons and our fellow MED13L families is encouraging.
Although there is much more work to be done, our family feels less lonely and the medical community is more informed. My gratitude runs deep for the families paving the way for those diagnosed with MED13L. I will always have a special place in my heart for the families that are leaning on each other. The families are the best advocates for our loved ones and the leaders that will direct the objectives of the foundation.
Welcome to our MED13L family – we are so glad we can support each other. There is much more to come for this community if we can stay united, driven, and hopeful.
