DESSH Foundation and Mission Realty join forces on Rare Disease Day

To the Editor:

The DESSH Foundation and Mission Realty joined forces with the 25-30 million Americans living with a rare disease and health care advocates around the world for Rare Disease Day on Feb. 28.

Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

The DESSH Foundation was founded by a local Vernon family for their son, who has a rare genetic disorder called DeSanto-Shinawi Syndrome (DESSH). DESSH is a neurodevelopmental disorder that causes developmental delay, intellectual disability, behavioral challenges, autism, hypotonia, and seizures.

The mission of The DESSH Foundation is to raise awareness of DeSanto-Shinawi Syndrome among the medical profession and the public, to advance research and education, and to provide a support-community for patients and families challenged by DESSH. Each February the foundation hosts an awareness ribbon fundraiser and asks supporters to display ribbons on Rare Disease Day and beyond. For more information visitdessh.org.

This Rare Disease Day, Vernon Township Schools hosted a “dress down” day and collected donations for The DESSH Foundation to support a student with the syndrome. In gratitude for VTSD’s support, Mission Realty Company, a dedicated DESSH sponsor, will make a $500 donation to Vernon Township Schools plus match donations collected up to an additional $500.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people in the United States. There are more than 7,000 rare diseases currently identified, and approximately 90% of them are still without FDA-approved medical treatments.

Rare Disease Day takes place every year on the last day of February (Feb. 28 or Feb. 29 in a leap year) — the rarest date on the calendar — to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008.

For more information about Rare Disease Day in the U.S., go to rarediseaseday.us.

Caitlin Piccirillo

The DESSH Foundation