Hermanowski Family Foundation Initial Request Form<\/p>\n
Organization Name: Koolen-de Vries Syndrome Foundation
\nLegal Name (if Different):
\nAlso Known As: KdVS Foundation
\nMailing Address: 609A Piner Road, Suite 319
\nCity: Wilmington
\nState: NC
\nPostal Code: 28409
\nMain Phone: 833-731-5387
\nMain Fax:
\nOrganization Website: www.kdvsfoundation.org
\nEmployer ID Number: 42-3208388
\nOrganization Tax Status: Nonprofit<\/p>\n
Proposal Information<\/p>\n
Today’s Date: 11\/16\/22
\nRequested Amount: 10000<\/p>\n
Project Title: Koolen-de Vries Syndrome (KdVS) Foundation Scientific Meeting & Patient Advocacy Summit
\nProject Description:<\/p>\n
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, \u201cto educate, increase awareness, and promote research for the support and enrichment of individuals living with KdVS and their families.\u201d The Foundation is run 100% by volunteers.
\nKdVS is one of nearly 11,000 rare diseases in the
\nworld. 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.
\nThe 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.
\nThe 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.\n<\/p>\n
Total Project Budget: 150000<\/p>\n
Other Funding
\nSources For The Project (Committed & Potential): NIH, pharmaceutical companies, individual donations<\/p>\n
Project Duration: 3 days
\nGeographical Area Served: Worldwide (Meeting and Summit in Florida)
\nAge Group To Be Served: 0-100 years old<\/p>\n
Contact Information<\/p>\n
Contact Prefix (Mr,Mrs etc.): Ms.
\nContact First Name: Ashley
\nContact Last Name: Point
\nContact Title: President, Board of Directors
\nContact Phone: 704-342-1445
\nContact Email: ashley@kdvsfoundation.org<\/p>\n","protected":false},"excerpt":{"rendered":"
Hermanowski Family Foundation Initial Request Form 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 Today’s Date: […]<\/p>\n","protected":false},"author":5,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-2504","post","type-post","status-publish","format-standard","hentry","category-grants"],"_links":{"self":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/2504","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2504"}],"version-history":[{"count":1,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/2504\/revisions"}],"predecessor-version":[{"id":2505,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/2504\/revisions\/2505"}],"wp:attachment":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2504"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=2504"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=2504"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}