Hermanowski Family Foundation Initial Request Form

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Organization Name: Koolen-de Vries Syndrome Foundation
Legal Name (if Different):
Also Known As: KdVS Foundation
Mailing Address: 609A Piner Road, Suite 319
City: Wilmington
State: NC
Postal Code: 28409
Main Phone: 833-731-5387
Main Fax:
Organization Website: www.kdvsfoundation.org
Employer ID Number: 42-3208388
Organization Tax Status: Nonprofit

Proposal Information

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Today’s Date: 11/16/22
Requested Amount: 10000

Project Title: Koolen-de Vries Syndrome (KdVS) Foundation Scientific Meeting & Patient Advocacy Summit
Project Description:

The Koolen-de Vries Syndrome (KdVS) Foundation is eager to partner with you for the upcoming international Patient Advocacy Summit in Orlando, Florida July 19-22, 2023. The mission of the Koolen-de Vries Syndrome Foundation is, “to educate, increase awareness, and promote research for the support and enrichment of individuals living with KdVS and their families.” The Foundation is run 100% by volunteers.
KdVS is one of nearly 11,000 rare diseases in the
world. KdVS was only identified in 2006 by Dr. Koolen and Dr. de Vries. KdVS is a rare genetic condition caused by a microdeletion or mutation on chromosome 17 (the KANSL1 gene) which occurs randomly during fetal development. Individuals with KdVS, suffer from developmental delays and a wide array of health issues, including feeding issues, epilepsy, heart/respiratory abnormalities, kidney problems, brain malformations, low muscle tone, and speech issues. As a result of KdVS, individuals experience a range of mental, physical, and cognitive challenges and disabilities.
The Scientific Meeting and Summit will bring together an expected 500 participants from around the world to Orlando, Florida, USA. Central to the gathering will be a unique opportunity to learn, collaborate, and support patients and their families, and conduct clinical studies to further research initiatives. In addition to Drs. Koolen and de Vries from the Netherlands, the Summit will include Dr. Ken Myers (pediatric epileptologist) from Canada, Dr. Nael Kasri (neuroscientist), Dr. Angela Morgan (pediatric speech pathologist) from Australia, Dr. Helen Willsey (neurobiologist) from California, Dr. Victor Faundez (cell biologist) from Georgia.
The Summit will feature keynote presentations, specialist panels, and various breakout sessions. Families and caregivers will directly benefit from conventional and reimagined interventions from other KdVS families.

Total Project Budget: 150000

Other Funding
Sources For The Project (Committed & Potential): NIH, pharmaceutical companies, individual donations

Project Duration: 3 days
Geographical Area Served: Worldwide (Meeting and Summit in Florida)
Age Group To Be Served: 0-100 years old

Contact Information

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Contact Prefix (Mr,Mrs etc.): Ms.
Contact First Name: Ashley
Contact Last Name: Point
Contact Title: President, Board of Directors
Contact Phone: 704-342-1445
Contact Email: ashley@kdvsfoundation.org