Hermanowski Family Foundation Initial Request Form<\/p>\n
Organization Name: DDX3X Foundation
\nLegal Name (if Different): N\/A
\nAlso Known As: N\/A
\nMailing Address: 1000 North West Street, Suite 900
\nCity: Wilmington
\nState: Delaware
\nPostal Code: 19801
\nMain Phone: (302) 691-2100
\nMain Fax: N\/A
\nOrganization Website: https:\/\/ddx3x.org\/
\nEmployer ID Number: 81-1159359
\nOrganization Tax Status: 501(c)(3)<\/p>\n
Proposal Information<\/p>\n
Today’s Date: 03\/27\/2024
\nRequested Amount: $10,000<\/p>\n
Project Title: DDX3X Center of Excellence
\nProject Description:<\/p>\n
The DDX3X Foundation respectfully requests $10,000 from the Hermanowski Family Foundation to develop a new Center of Excellence for DDX3X Syndrome.<\/p>\n
Discovered in 2014, DDX3X Syndrome accounts for 1-3% of unexplained intellectual disability cases in women and girls and is associated with autism, brain malformations, and epilepsy. DDX3X Syndrome is characterized by intellectual and developmental disability; however, the full clinical spectrum includes involvement outside the central nervous system, with significant implications for medical management. The disorder presents differently depending on the mutation, and individuals with DDX3X Syndrome have symptoms including, microcephaly, corpus callosum hypoplasia, and ventricular enlargement. DDX3X Syndrome is a rare disease, and there is currently no approved treatment.<\/p>\n
Our mission is to connect families, resources, and the medical community to advance research for a cure for DDX3X Syndrome. To advance research for DDX3X Syndrome, we have established two Centers of Excellence for DDX3X Syndrome at Rush University and the University of California-San Francisco. At our Centers of Excellence, DDX3X patients and families can receive the best clinical care for DDX3X Syndrome\u2013\u2013provided by clinicians and other health professionals who are experts on the syndrome. <\/p>\n
In 2025, the DDX3X Foundation will establish a Center of Excellence at Children\u2019s Hospital of Pennsylvania and UPENN Medical Center. This will be the first Center of Excellence that can provide a continuity of care\u2013\u2013including integrated and specialized pediatric and adult care\u2013\u2013to DDX3X patients and families. Our Center of Excellence will provide high-quality care to DDX3X patients and families on the east coast, and support efforts to launch a multi-site natural history study for DDX3X Syndrome. In 2024, the DDX3X Foundation received a generous donation to launch the Center of Excellence, and we are seeking additional resources to close the funding gap needed to open the Center of Excellence and onboard staff members. <\/p>\n
Total Project Budget: $100,000<\/p>\n
Other Funding
\nSources For The Project (Committed & Potential): Individual Donation – $25,000 (Commited)<\/p>\n
Project Duration: January 2025 \u2013 December 2025
\nGeographical Area Served: Primarily states on the east coast, however, all patients and families with DDX3X Syndrome throughout the United States can be served at our Center of Excellence.
\nAge Group To Be Served: Young girls and women (aged 11-21)<\/p>\n
Contact Information<\/p>\n
Contact Prefix (Mr,Mrs etc.): Ms
\nContact First Name: Chelsey
\nContact Last Name: McCarthy
\nContact Title: Executive Director
\nContact Phone: (302) 691-2100
\nContact Email: Chelsey@ddx3x.org<\/p>\n","protected":false},"excerpt":{"rendered":"
Hermanowski Family Foundation Initial Request Form Organization Name: DDX3X Foundation Legal Name (if Different): N\/A Also Known As: N\/A Mailing Address: 1000 North West Street, Suite 900 City: Wilmington State: Delaware Postal Code: 19801 Main Phone: (302) 691-2100 Main Fax: N\/A Organization Website: https:\/\/ddx3x.org\/ Employer ID Number: 81-1159359 Organization Tax Status: 501(c)(3) Proposal Information Today’s […]<\/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-5915","post","type-post","status-publish","format-standard","hentry","category-grants"],"_links":{"self":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/5915","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=5915"}],"version-history":[{"count":1,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/5915\/revisions"}],"predecessor-version":[{"id":5916,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/5915\/revisions\/5916"}],"wp:attachment":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5915"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5915"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5915"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}