A rare coincidence.
How two V Teamers connected over their children’s Malan syndrome diagnosis.
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August 19th is Malan Syndrome Awareness Day. Malan Syndrome is so rare that as of 2022, only about 200 people in the world, mainly children, have been diagnosed with the condition.
The rare genetic disorder, which was first discovered back in 2012, is characterized by macrocephaly, hydrocephalus, cognitive impairment, epilepsy, vision/hearing impairment, heart abnormalities and scoliosis. As of now there’s limited understanding of what actually causes the syndrome and how it progresses. And currently, no disease-modifying treatment exists.
Earlier this year, V Teamer Alyssa McCullion’s daughter, Nora, was diagnosed with Malan Syndrome. When she shared the information with her team, one of her teammates, Lori Greenberg, decided to do some research to learn more about the syndrome. The research led her to the Malan Syndrome Foundation site where she came across a familiar name, Bosko Kacarevic. Bosko has served as a member of the Malan Syndrome Foundation Board, has a daughter with Malan Syndrome and is currently a V Teamer that has worked with Lori on a number of projects.
Bosko and Alyssa, determined to make a difference, have created the Verizon Sunflower Team for Run, Walk & Roll for Malan Syndrome 2022. To learn more about the condition and how you can support our fellow V Teamers and other families affected by this syndrome, click here.