Thursday night, the Unified Government of Wyandotte County Municipal Office Building joins Niagara Falls, the Mayo Clinic, Baltimore Ravens’ stadium, and many other landmarks in shining blue this week as part of a 60-landmark push spanning 33 states and Canada to raise visibility for MEF2C Related Syndrome, a rare neurological and genetic disorder.
“On May 14th at 6 p.m., I asked our community to join us in lighting up blue for MEF2C awareness day,” Mayor/CEO Christal Watson said in a video posted to YouTube for the occasion.
Many children with MEF2C “may show symptoms similar to autism, cerebral palsy, epilepsy, or other developmental disorders, which is one reason this condition has historically been misdiagnosed or underdiagnosed for years,” she says.
“Today, because of advances in genetic testing and awareness, more families are finally receiving answers. The numbers may appear to be rising, but in many cases, these are children and families who were previously overlooked, misidentified, or still searching for a diagnosis,” Watson says.
“I invite you to turn on a blue light at your home, your business, your porch, or wherever you can help shine a light on hope, understanding, research, and support for families impacted by MEF2C,” she says.
“In Wyandotte County, we believe every family matters, every child matters, and no one should feel invisible,” Watson says.
MEF2C Related Syndrome
The Myocyte Enhancer Factor 2C gene sits on the fifth chromosome at band 14.3, which is why organizers chose May 14, written 5/14, for the awareness day. The gene encodes a transcription factor that regulates the activity of nearly 2,000 other genes, many of which guide brain development and function, according to the US MEF2C Foundation.
When that brain function is disrupted by genetic variants, the result is MEF2C Related Syndrome, which the foundation describes as a severe form of Autism Spectrum Disorder. The foundation lists a broad range of symptoms that can include global developmental delay, severely impaired or absent language, profound learning difficulties, epilepsy, severe hypotonia sometimes mixed with hypertonia, stereotypical and repetitive movements, sleeping difficulties, and feeding difficulties.
MEF2C dysfunction is also linked to schizophrenia, ALS, intellectual disability, and cerebral palsy.
The foundation estimates roughly 400 patients have been identified worldwide, with nearly half living in the United States. Its patient registry through Simons Searchlight has grown from 17 patients in March 2023 to about 170 today, a jump the foundation attributes to expanded genetic testing rather than rising incidence. No MEF2C-targeted treatments are currently available.
The rest of the lineup
Other participating sites include US Bank Stadium in Minneapolis, the Centennial Wheel at Navy Pier in Chicago, the London Bridge at Lake Havasu City, Ariz., the World’s Only Corn Palace in Mitchell, S.D., the Biloxi Lighthouse in Miss., the Mid-Hudson Bridge in Poughkeepsie, N.Y., and the Helmsley Building on Park Avenue in New York City. Mayo Clinic campuses across Minn., Fla., Ariz., and Wis. are also taking part.
The Dover, Del.-based US MEF2C Foundation says its mission is to accelerate research toward treatments and a cure, connect families with information and support, and build collaboration within the scientific community. It is helping fund an RNA-based therapeutic project at the Cowan Lab at the Medical University of South Carolina, and a historical study at the lab of Dr. Wendy Chung at Boston Children’s Hospital and Harvard Medical School.
More information, along with the full list of participating landmarks, is available at usmef2cfoundation.org.