Hermanowski Family Foundation Initial Request Form

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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

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Today’s Date: 03/27/2024
Requested Amount: $10,000

Project Title: DDX3X Center of Excellence
Project Description:

The DDX3X Foundation respectfully requests $10,000 from the Hermanowski Family Foundation to develop a new Center of Excellence for DDX3X Syndrome.

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.

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––provided by clinicians and other health professionals who are experts on the syndrome.

In 2025, the DDX3X Foundation will establish a Center of Excellence at Children’s Hospital of Pennsylvania and UPENN Medical Center. This will be the first Center of Excellence that can provide a continuity of care––including integrated and specialized pediatric and adult care––to 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.

Total Project Budget: $100,000

Other Funding
Sources For The Project (Committed & Potential): Individual Donation – $25,000 (Commited)

Project Duration: January 2025 – December 2025
Geographical 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.
Age Group To Be Served: Young girls and women (aged 11-21)

Contact Information

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Contact Prefix (Mr,Mrs etc.): Ms
Contact First Name: Chelsey
Contact Last Name: McCarthy
Contact Title: Executive Director
Contact Phone: (302) 691-2100
Contact Email: Chelsey@ddx3x.org