31 Jan

Chief Scientific Officer Announced

February 1, 2023 The Koolen-de Vries Syndrome Foundation is excited to announce that Dr. Anna Pfalzer, of Vanderbilt and COMBINEDBrain, has been hired as the Foundation’s first-ever Chief Scientific Officer. Dr. Pfalzer has become very familiar with Koolen-de Vries Syndrome while working on the COMBINEDBrain team that developed a KdVS Strategic Research Plan over the […]

24 Apr

It Takes a Village – A Rare Collaboration

In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine,  Koolen-de Vries Syndrome Foundation, and SETBP1 Society are teaming up to offer a webinar series called It Takes a Village on the first Saturday of the month. It Takes a Village will be a program full of useful, interesting, and […]

8 Mar

KdVS Foundation announces Investigator Grant

The Koolen-de Vries Syndrome Foundation (KdVSF) is pleased to announce their Investigator Grant program. Through our Investigator Grant, KdVSF hopes to accelerate the development of therapeutics for the treatment of those living with Koolen-de Vries Syndrome (KdVS).  This grant program is designed to facilitate investigations that will jumpstart research into KdVS and lay the groundwork […]

10 Feb

Koolen-de Vries Syndrome Foundation Selects Clinical Fellow

For Immediate ReleaseFebruary 10, 2022 Koolen-de Vries Syndrome Foundation Selects Clinical Fellow to Study the Use of Artificial Intelligence andSpeech Therapy in Assisting Clinicians in Diagnosing KdVS WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation has awarded Lex Dingemans of Radboud University Medical Center in Nijmegen, Netherlands a two year clinical fellowship grant. Dingemans will […]

22 Jun

$100,000 Grant Awarded

For Immediate Release June 22, 2021 Koolen-de Vries Syndrome Foundation Awards $100,000 Grant to Post-doctoral Fellow for Further “Brain-in-a-Dish” Research WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation recently awarded a $100,000 post-doctoral fellowship grant award to post-doctoral fellow Dr. Brooke Latour for her work in neural development and neurodevelopmental disorders, and how it relates […]

3 Sep

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 […]

12 Nov

Leadership Transitions in Koolen-de Vries Syndrome Foundation Non-Profit Organization

Having a child with an illness or a disease is a circumstance that can turn almost any parent into a fierce advocate. For Laura Ralph of Brownsburg, Indiana, her advocacy became a calling when she founded Supporting Families with Koolen-de Vries Syndrome (SFKdVS) in 2013. Ralph, who has served as president since the Foundation’s formation, is now stepping aside to hand the reins to Patty Tiberg of Aledo, Texas, whose son, Colby, has the syndrome.