Koolen-de Vries Syndrome Foundation is governed by a Board of Directors comprised of volunteers. We are very passionate about our children and the families within the Koolen-de Vries Syndrome (KdVS) community. Our Board of Directors has a wide range of strengths and experiences to draw from including leadership, legal, fundraising and raising awareness in our communities. We would like you to get to know us so that you can understand our passion for Kool Kids as much as we do. Laura Ralph was inspired to start the Koolen-de Vries Syndrome Foundation foundation after receiving a “pay it forward” gift. Her daughter was gifted a speech communication device by another KdVS family. After many sleepless nights, she decided to approach several other families about taking the next step to create a non-profit for KdVS. After 3 months of planning, researching and hard work, her passion and dream became a reality.
We look forward to meeting all of the families and combining our passions with your passions to help KdVSF become an amazing resource for our community!
Would you like to join the KdVSF Board? Please click here to download the application. Instructions on where to submit the application can be found at the bottom of the application.
Angela de Jong
Patty Tiberg serves as the Group Publisher for the Cowboy Publishing Group in Fort Worth, Texas. A part of The Morris Media Network, Cowboy Publishing Group publishes several equine related magazines and manages a variety of web sites and digital media platforms. A graduate of Texas A&M University, Patty worked as the director of member services for the Horse Industry Alliance and as membership director for the Alabama Quarter House Association. She was born and raised in a suburb of Long Island, New York. In 2005, the Fort Worth Business Press honored Patty as one of the “Top 40 Under 40”, a program that recognizes young community leaders. Patty is also an active volunteer for several organizations. She serves on the Board of Directors for Western Wishes and is a volunteer for the Aledo Children’s Advocats.
Patty and her husband, Steven, reside in Aledo, Texas with their son, Colby, and daughter, Taylor. Colby was diagnosed with Koolen-de Vries Syndrome at the age of 4 (2007) and is an inspiration to all who know him.Email Patty Tiberg: email@example.com
Michael was born and raised in Columbus, GA and attended North Georgia College and State University where he met his wife, Lindsey. Upon graduation in 2006, he received his commission into the United States Army and was married in 2007. Upon returning from a deployment to Iraq in 2009, Michael and Lindsey were stationed in Fort Hood, TX where they currently reside. In August 2011, they welcomed their first child, Maddox, who was diagnosed with Koolen-de Vries Syndrome at 10 months old. As a Kool parent, Michael is motivated in spreading awareness about KdVS and assisting current and future KdVS families in their journeys through the growth of the SFKDVS organization.Email Michael Cooper: firstname.lastname@example.org
Alayna graduated from Ohio Northern University with a degree in civil engineering. In 2011, she and her husband, Ryan, welcomed their first child, Mirabel. At 3 months old, Mirabel was diagnosed with Koolen-de Vries Syndrome. Alayna worked as a civil engineer in the water and wastewater treatment field for 12 years before deciding to stay home in 2015. Alayna is now a full-time mom, therapist and the manager of Mirabel’s therapies and appointments! Mirabel also has a younger sister named Emmeline and they are wonderful friends. Alayna is passionate about meeting new families in the special needs community and about increasing awareness and education about Koolen-de Vries Syndrome.Email Alayna Haynam: email@example.com
Steven Tiberg is an Architect with Multatech Architects and Engineers in Fort Worth, Texas. Steven is originally from Long Island, New York and graduated from the New York Institute of Technology.
Steven and his wife, Patty, moved to Texas in 1999 and currently reside in Aledo, Texas where their son, Colby, and daughter, Taylor, were born. Colby was diagnosed with 17Q21.31 Microdeletion, now Koolen-de Vries Syndrome, in October 2007 at the age of 4. At that time, when no information was available, the internet was fairly new and Facebook was not widely used, Steven and Patty had the good fortune and luck to connect with one other family after posting on Askthegeneticist.com. The original Chromosome 17 Yahoo group was then formed in February 2008. From there, it’s grown from two families into what it is now, including the Facebook page and website.Email Steven Tiberg: firstname.lastname@example.org
Angela de Jong
Angela has worked in radio and television since graduating from the University of Memphis in 1991. Her work earned her many accolades including two Emmy Awards. She currently produces a You Tube show called “Gimme 5 Mom”. She recently accepted a position as Development Director at St. Ann Catholic School. Angela and her husband, Remco, have two children, Alyssa and Luca. In 2012, Alyssa was diagnosed with pediatric malignant melanoma. She was only 9 years old. The cancer led her to the doors of St. Jude Children’s Research Hospital where doctors treated her and began the search to figure out the nature of her long list of medical issues. A year later, Alyssa was diagnosed with Koolen-de Vries Syndrome. Angela hopes to learn more about KdVS and help others struggling with a new diagnosis. Spunky, red-headed Alyssa inspires others with her spirit, compassion and desire to push herself everyday to achieve big things.Email Angela de Jong: email@example.com