A rare coincidence.

By: Jennifer Marin
Communications Strategist/Writer

How two V Teamers connected over their children’s Malan syndrome diagnosis.

Full Transparency

Our editorial transparency tool uses blockchain technology to permanently log all changes made to official releases after publication. However, this post is not an official release and therefore not tracked. Visit our learn more for more information.

Learn more
A rare coincidence

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.

V Team, go to VZWeb to join the conversation

About the author:

Jennifer Marin is a former local news reporter/anchor. She was born in Colombia but raised in Northern New Jersey. She loves to craft new recipes, create videos, and spend time with her pug, Sweetie.

Related Articles

10/08/2024

From minor inconveniences, like a temporary boil-water advisory, to catastrophic destruction, where homes and businesses are lost, entire communities are devastated, & lives are tragically affected.

06/26/2024

Every company needs a purpose. It’s the reason the company exists and highlights our meaningful role in the world. Purpose drives our culture, the way we do business and how we serve our customers.