SKS
SKS
Susan joined Smith-Kingsmore Syndrome Foundation as Executive Director in 2022, after 16 years of consulting and operations leadership at Boston Consulting Group (BCG). Susan’s passion is collaborating with diverse teams to make change happen. She has a Masters of Law and MBA from Oxford University, where she was a Rhodes Scholar. Susan is a native Australian, and lives in Philadelphia with her husband Alex (who is from Brazil), and her three daughters. Her middle daughter Carmen was diagnosed with SKS in 2021, and Susan is honored to serve our SKS community both professionally and personally.
Kristen Groseclose is the Director of Development and co-founder of the Smith-Kingsmore Syndrome Foundation. She led the organization in a global development campaign, which funded 3 years of SKS foundational research. This $178,000 investment from our community resulted in a $2.4 million NIH grant for our SKS researchers, accelerating the timeline to treatment for this new ultra rare condition. Kristen is a Fulbright scholar, and has a Bachelor’s degree from Penn State and Master’s from Indiana University, with a focus on German and teaching. Her adult son Jack was diagnosed at age 15. This journey to diagnosis compelled her to create meaning from the struggles her family has faced living with SKS. It motivates her to be part of this stellar team working hard to support research, treatments and ultimately a cure for patients around the world diagnosed with SKS.
Sarah is President of the Smith-Kingsmore Syndrome Board. She earned a Bachelor of Science in Nursing from UVA, followed by a Master of Science in Nursing from the University of Alabama, Birmingham. She has been on staff at UVA Medical Center in Virginia, since 2005, first as a registered nurse in the NICU, and since 2013 as a certified Neonatal Nurse Practitioner. Sarah has also been on the editorial board for the Perinatal Continuing Education Program since 2010. When her son Charlie was diagnosed at age 7 with SKS, she felt driven to focus on giving families a voice. Sarah has spearheaded the Smith-Kingsmore Syndrome Global Registry and helps providers connect with Smith-Kingsmore syndrome specialists across the world.
Nazira is Vice-President of the Smith-Kingsmore Syndrome Foundation (SKSF) and Chair of SKSF’s Medical and Scientific Advisory Team. She is a registered nurse of over 20 years. Her medical experience and caregiver persona bring forward a special ability to collaborate with Smith-Kingsmore syndrome (SKS) medical experts who address the need for more research and other medical concerns of the SKS community. Nazira’s son, Ezra, was diagnosed at age three through the Undiagnosed Diseases Network (UDN) with a particularly rare form of mosaic Smith-Kingsmore syndrome. She felt compelled to join the foundation as she could relate to how difficult the journey was to receive a diagnosis and wanted to help present and future Smith-Kingsmore syndrome families.
Mike is Treasurer and co-founder of the Smith-Kingsmore Syndrome Foundation. Over Mike’s 25-year career in program management he’s led multiple challenging programs, interfacing directly with customers and technical project teams to deliver high levels of quality and drive success. Mike has a BA from the University of Washington, an MA from Indiana University, and has studied abroad in Brazil and Germany. Mike has been an active volunteer with food banks and low-income housing construction and repair. Mike leveraged his corporate and volunteer experience, and dedicated his energies to launch and run the Smith-Kingsmore Syndrome Foundation.
Eric is a Lieutenant Colonel in the United States Army, with 16 years of active duty. He was born and raised on the small island of Sitka, Alaska, and through the Army earned his Bachelor’s degree and Masters in Intelligence Studies specializing in Counter Terrorism. Through growing up on the island of Sitka, AK and throughout his Army career, Eric has learned that nothing is owed or given in life and this is why he joined the Smith-Kingsmore Syndrome Foundation. “I will fight to find a cure for my son, or die trying. That is my responsibility as an active father and disability advocate.”
Cass is a licensed attorney, technology consultant and writer, with a passion for empowering families to navigate the challenges of rare diagnoses. Over the years, she has watched family and friends with disabilities navigate a system that is already very challenging, but even more so when a specific diagnosis is elusive. Cass has a Bachelors degree from University of Richmond, and an MA and JD from Duke University.
Dan is an SKSF board member and an IT Director at a research university. Dan joined the SKSF cause along with his wife Sarah when their son Charlie was diagnosed with SKSF in 2019. He used his experience working with other non-profit organizations to help the initial launch of the foundation. Dan is passionate about building community and strives to create engagement opportunities for SKS families while also looking for opportunities to pair technology with the foundation’s mission.
Matt Walsh is a founding board member of the Smith-Kingsmore Syndrome Foundation. Fueled by his son’s triumph over the rare disease, Matt champions this cause with a deeply rooted commitment. Beyond titles, his leadership embodies a genuine dedication to research and fostering hope within the SKS community. Professionally, Matt is the founder and CEO of Blue Signal Search and Resume and Career Services, bringing over a decade of expertise in talent acquisition and career coaching. He is an Advisor and on multiple boards both for profit and non-profit. Matt channels his success into a personal mission of making a positive impact.
~ Bernard Williams