United MSD Foundation founder and child.

About Us

Mission, Vision, and Values

Founded in 2016, United MSD Foundation is a 501(c)(3) nonprofit organization serving an international community of Multiple Sulfatase Deficiency (MSD) families, researchers, and care providers. We exist to bring awareness to MSD, fund research toward treatment, and support families through education, resources, and community.

Since inception, our mission has been to cure MSD. To that end, we have funded a gene therapy mouse model and subsequent toxicology study, and a Natural History Study. We run a MSD Biobank and Patient Registry to provide researchers with access to patient data and samples. Currently, we are supporting first-in-human gene therapy trials with our partners at the Children’s Hospital of Philadelphia.

Our Mission

To cure Multiple Sulfatase Deficiency

Our Vision

We aspire for all children with MSD to lead a life without limitations

Our Values

Compassion / Inclusion / Community / Collaboration / Responsibility

Compassion – We lead with care, respect, and empathy.

Inclusion – We endeavor to foster a culture of belonging while actively working to remove barriers, biases, and discrimination that prevent all individuals from fully participating and benefiting from our services.

Community – We strive to create a sense of belonging, support, and empowerment by providing an environment for MSD families to build connections, alleviate isolation, amplify their voices, and share knowledge.

Collaboration – We foster partnerships between families, researchers, organizations, and funders to advance our mission and goals.

Responsibility – We recognize it is a privilege and duty to represent our families to the larger medical and policy communities, to share our families’ stories with dignity and accuracy, and to steward philanthropic resources with integrity.

2023-2025 Strategic Plan

The United MSD Foundation adopted a new strategic plan on July 21, 2023. The process was guided by a Strategic Planning Task Force. The Task Force collected feedback through stakeholder surveys, a board retreat, staff feedback, and a progress report from the previous strategic plan.

The organization recommitted to the stated mission (to cure MSD), and adopted a revised vision statement and new organizational values. Four strategic priority areas with corresponding goals were outlined.

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United MSD Foundation

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