Press Release Archives - Koolen-de Vries Syndrome Foundation

13 Feb

2024 Research Opportunities Press Release

For Immediate Release February 13, 2024 Koolen-de Vries Syndrome Foundation Funds Five Research Opportunities for 2024 WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation is pleased to announce that […]

5 Jun

KdVS Foundation awards Investigator Grant

For Immediate Release May 31, 2023 Koolen-de Vries Syndrome Foundation Working with St. Jude Children’s Research Hospital Through Investigator Grant Program WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation […]

17 Apr

The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award

For Immediate Release April 11, 2023 The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation has been awarded […]

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. […]

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 […]

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 […]

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. – […]

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 […]

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, [email protected] Patty Tiberg, 817/905-1360, [email protected] Wilmington, NC-The Koolen-de Vries Syndrome Foundation (KdVSF), whose mission is to educate, increase awareness and promote research for […]

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.