The Marshall-Smith Syndrome Organization of the USA (MSS-USA) is a 501c3 nonprofit patient advocacy organization that aims to provide support to individuals with Marshall-Smith Syndrome and their families by creating connection, raising awareness through advocacy, and increasing understanding of the ultra-rare disorder through formal research.

Board of Directors

We are proud of the team that has chosen to give the generous donation of their time and diverse expertise to help MSS-USA run smoothly. Below are the members of our inaugural Board of Directors.

• Jennifer Gilchriest   – President
• Rishel Lutzi – Vice-President
• Nicko Margolies – Executive Board Member
• Georgina Saunderson – Executive Board Member
• Lisa Duncan – Executive Board Member
• Kristina Hightshoe – Executive Board Member
• Joy Holub – Executive Board Member
• Stephanie Drake – Executive Board Member

Medical Advisory Board

MSS-USA wouldn’t be able to do what we do without the guidance and expertise of our Medical Advisory Board. These providers all have experience with Marshall-Smith Syndrome and are dedicated to improving patient outcomes and quality of life.

• Gregory Allen, MD – Pediatric Otolaryngology
• Allyson Alexander, MD, Ph.D – Pediatric Neurosurgery
• Christopher Baker, MD – Pediatric Pulmonology
• Timothy Hadley, DO, MPH – Pediatric Gastroenterology
• Naomi Meeks, MD – Clinical Genetics & Genomics, Pediatric
• Cheryl Ackert-Bicknell, MD, Ph.D – Professor of Orthopedics
• Keren Machol , MD, Ph.D – Molecular and Human Genetics
• Grace Kim, MD – Diabetes and Endocrinology

Fundraising and Program Goals

MSS Patient Registry

One of our primary fundraising benchmarks is raising $15,000 to establish and maintain an IAMRARE patient registry through the National Organization for Rare Disorders (NORD). This registry will play a critical role in advancing research and improving understanding of Marshall-Smith Syndrome.

By collecting secure, patient-reported data, the registry helps researchers identify trends, track health outcomes, and support the development of future treatments and care strategies. Participation in the registry empowers families to contribute directly to research that may benefit both current and future generations affected by MSS.

Meetups and Community Building

MSS-USA is committed to creating opportunities for families to connect, share experiences, and build lasting support networks. We aim to raise funds to organize and host weekend-long family gatherings within the United States.

While similar events are hosted internationally by the MSS Research Foundation in The Netherlands, travel barriers can make attendance difficult for many U.S. families. By hosting meetups in alternating years, we hope to expand access to meaningful in-person connections and strengthen the global MSS community.

Family Outreach and Support

A portion of donated funds supports ongoing family outreach initiatives. These efforts include welcoming newly diagnosed families, celebrating milestones, providing encouragement during challenging times, and offering support resources tailored to the unique needs of MSS families. Our goal is to ensure that no family feels isolated on their journey.

Our Commitment to Transparency and Stewardship

The Marshall-Smith Syndrome Organization of the USA, Inc. is recognized as a public charity and has received tax-exempt status from the Internal Revenue Service under Section 501(c)(3). Contributions to MSS-USA may be tax-deductible under IRS Section 170. The organization is also qualified to receive tax-deductible bequests, devises, transfers, or gifts under Sections 2055, 2106, and 2522.

Donors will receive an official donation receipt from MSS-USA for tax deduction purposes. We are deeply grateful for the generosity of our supporters and remain committed to using all contributions responsibly to benefit the MSS community.