National Med13l Day
National MED13L Day is a global observance dedicated to raising awareness about MED13L syndrome, a rare genetic condition caused by mutations in the MED13L gene. This condition is characterized by developmental delays, intellectual disabilities, speech and motor impairments, and other health challenges such as heart defects and seizures. The day aims to connect families, empower individuals affected by the syndrome, and foster research for better understanding and treatment.
Quick Facts
- When is it? May 13th annually.
- Tagged as: Awareness, Genetic Disorders, Rare Diseases.
- What’s the hashtag? #NationalMED13LDay.
- When was it founded? 2022.
- Who founded it? Kelly Sexton.
History of National MED13L Day
National MED13L Day was established in 2022 by Kelly Sexton to bring attention to MED13L syndrome, a condition first described as a neurodevelopmental disorder in 2013. With advancements in genetic testing, more cases have been identified, highlighting the need for awareness and support. The day serves as a platform to celebrate the resilience of individuals with the syndrome and their families while promoting research efforts.
Timeline
- 2003: Initial identification of MED13L-related genetic abnormalities.
- 2013: MED13L syndrome officially recognized as a neurodevelopmental disorder.
- 2022: National MED13L Day officially founded by Kelly Sexton.
- 2023: ICD-10 code Q87.85 assigned for accurate diagnosis and medical coding.
- 2024: First large-scale family and scientific meeting held to advance research.
Dates by Next Year (2025–2030)
| Year | Month and Date | Day |
|---|---|---|
| 2025 | May 13 | Tuesday |
| 2026 | May 13 | Wednesday |
| 2027 | May 13 | Thursday |
| 2028 | May 13 | Saturday |
| 2029 | May 13 | Sunday |
| 2030 | May 13 | Monday |
Observed
On National MED13L Day, communities come together to:
- Share stories of individuals living with MED13L syndrome.
- Host events to raise funds for research and family support.
- Spread awareness through social media campaigns using #NationalMED13LDay.
Fun Facts About National MED13L Day
- The “MED” in MED13L stands for “Mediator,” reflecting its role in gene regulation.
- The syndrome affects approximately 2–6 individuals per 100,000 births.
- Despite its rarity, over 287 cases have been identified globally as of 2024.
Quiz
- What does the “MED” in MED13L stand for?
- When is National MED13L Day celebrated?
- Who founded National MED13L Day?
(Answers: 1. Mediator; 2. May 13th; 3. Kelly Sexton)
FAQs
Q: What is National MED13L Day about?
A: It’s a day dedicated to raising awareness about MED13L syndrome and supporting affected individuals and families.
Q: How can I participate?
A: Share information on social media, attend awareness events, or donate to organizations supporting research.
Q: Is this condition hereditary?
A: Most cases are caused by new (de novo) mutations and are not inherited from parents.
Related
- Rare Disease Day (February)
- Autism Awareness Month (April)
- Global Genes Project
