14 Dec

Fall/Winter 2020 Newsletter

The Fall/Winter 2020 Koolen-de Vries Syndrome Foundation newsletter was emailed on December 14, 2020. Did you miss it? Not to worry! Features include: Meet our new Board President Feature article on Constipation from Medical Advisory Board Member and Kool Dad, Dr. Russell Zwiener Board Member Spotlight Kool Kampaign update Patient Advocacy Summit update

2 Dec

KdVS Foundation hosts webinar with Dr. Kasri

On Thursday, October 29, we hosted a conversation with Dr. Nael Nadif Kasri to discuss the latest research on stem cells and drug therapy. Over 100 people attended the webinar live through Zoom or on Facebook Live. We are very fortunate to have involved and personable researchers that care about KdVS research and our community. […]

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 […]

17 Nov

Concert Raises Awareness

This year, the KdVS Foundation welcomed the Speirs family into its global KdVS community. Andy and Virginia Speirs studied harp and cello performance at the University of Utah. Excited about the upcoming 2019 Patient Advocacy Summit in Park City, Utah, they organized and performed a harp/cello music concert to help raise funding and awareness for […]

4 Nov

Dr. de Vries runs marathon

The Koolen-de Vries Syndrome Foundation and The Kool Kid Alliance are thrilled to have had the support Dr. Bert de Vries as he ran the New York City Marathon on November 4, 2018 to raise awareness for Koolen-de Vries Syndrome! Dr. de Vries approached both organizations about finding a way to use his race to […]

15 Jul

Families Gather in Omaha, Nebraska

July 2018 saw 32 KdVS families gather in Ohama, Nebraska, USA. Hosted by Nicholle and Tony Reisdorff from Papillion, parents to Seth, along with Leslie and Neal Deremer from Nebraska City, parents to Ethan, and Kelly and Steve Walsh from Des Moines, Iowa, parents to Beckett. Local artists greeted families during the kick-off event at […]

26 Mar

2018 – Australian KdVS Family Gathering

Australian KdVS Family Gathering Where: Novotel Twin Waters Resort, Sunshine Coast – Queensland, Australia. Click here to view resort website. When: October 11th – 14th 2018 All enquiries to Andrea Smith Phone: +61 407 675 630 Email: ansmith@komatsu.com.au Mail: PO Box 1016 Camden NSW Australia 2570

8 Aug

Following her Heart

With 50-50 odds that her child may also be diagnosed with Koolen-de Vries Syndrome, England’s Lisa Collins pursued her dream of being a mom.

14 Jul

2017 KdVS Drug Therapy Research Update

Location: 2017 Koolen-de Vries Syndrome Patient Advocacy Summit Date: July 14, 2017 Katrin Linda, a PhD student researching at Radboud University Nijmegen, spoke about Koolen-de Vries Syndrome cellular and molecular research. To more easily understand the role that the KANSL1 gene plays, Katrin presented a simplified scenario. Working efficiently is easier when working in a […]

13 Jul

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, Tennessee July 13 – 15, 2017 The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in Memphis, TN. The event’s goal is for patients, caregivers and advocates to walk away equipped with information, ideas and goals to help form an action […]