Koolen-de Vries Syndrome Foundation Announces a New President of the Board of Directors

September 3, 2020

Contacts: Ashley Point, 704/342-1445, ashley@kdvsfoundation.org

Patty Tiberg, 817/905-1360, patty@kdvsfoundation.org

Wilmington, NC-The Koolen-de Vries Syndrome Foundation (KdVSF), whose mission is to educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome (KdVS) and their families, announced today the election of Ashley Point to the role of President of the Board of Directors. Point joined the Board at the end of 2019 and succeeds Patty Tiberg who has served as President from 2017-2020.

Tiberg comments, “It has been an honor to be a founding member and President of the KdVSF Board of Directors. I look forward to continuing to serve as a board member under Ashley Point’s leadership as we continue to grow and expand as an organization that will continue to serve the KdVS community.”

Ashley Point grew up in Marietta, GA and graduated from the University of Kentucky in 1999. She has worked in political fundraising in Washington, DC, Austin, TX and Charlotte, NC. Point previously served on the Board of Directors of the Girls on the Run of North Central WV, Curriculum Representative at Joan C. Edwards School of Medicine at Marshall University, Government Affairs Chair for the Junior League of Charlotte and as a volunteer at Levine Children’s Hospital and Carolinas Medical Center in Charlotte.

Point states, “I am deeply honored to be chosen for this position. Through our own experiences with our son, Davis (diagnosed at 1 year old), my husband and I have learned extensively about KdVS.” Tiberg will remain on the board to provide continued assistance. Point continued, “Patty has worked tirelessly to grow the Foundation. I hope to continue her work with the Board and further the outreach, awareness, fundraising, communication, and research. When families receive the KdVS diagnosis, I trust the Foundation will provide them with knowledge and support to navigate this new world.”

Koolen-de Vries Syndrome was first identified in 2006 by Drs. David Koolen & Bert de Vries and thus is a relatively new syndrome. KdVS is a genetic syndrome involving the 17th chromosome and is caused by a microdeletion at the 17q21.31 location or a change/mutation of the KANSL1 gene. This deletion/mutation causes developmental delays, learning difficulties and a number of other possible health issues. The prevalence of the microdeletion is now estimated at 1 in 55,000 individuals. Researchers continue to collect and analyze medical data and are working to develop specific disease management and surveillance strategies. To learn more or to contribute, please visit www.kdvsfoundation.org.