Malan syndrome was first identified in 2010 and linked to a change in the NFIX gene. Before Malan syndrome was discovered, many patients were clinically diagnosed as “Sotos-like” meaning they had characteristics of Sotos syndrome but did not have the NSD1 gene variant.
Nancy Schroyer started the Malan syndrome Facebook support group in 2015 with hopes of finding others on the same journey as she was with her son. Keira James joined Nancy as an administrator to the page. The Facebook group had a slow start but as of December 2019, the support group has grown to include close to 300 members. It was through this Facebook group that a committee of 4 parents was formed to create a formal organization. In December 2018, the Malan Syndrome Foundation was registered as a nonprofit corporation in the state of New Jersey. In September 2019, the Malan Syndrome Foundation became a 501(c)(3) tax-exempt nonprofit organization.
OUR LOGO- THE SUNFLOWER
You will notice we have chosen sunflowers to be a recurrent theme for our foundation. Sunflowers are tall and resemble the sun, which is associated with warmth, positivity, hope and happiness. They are hardy with a robust stem, capable of enduring difficult conditions. Like the sunflower, those affected by Malan syndrome are tall, resilient and bright.
The sunflower is one of the most recognizable flowers in the world. We hope by identifying with the sunflower and continuing to raise awareness, Malan syndrome will become more recognizable to medical professionals and more children and adults will be able to obtain an accurate diagnosis.