The revolution has begun!
Thank you for supporting Smith-Kingsmore Syndrome Foundation!
Our Vision
Creating a sunny world of hope for children with Smith-Kingsmore Syndrome by improving their quality of life through medical advancements and community support.
Our Mission
To improve the quality of life for children and families impacted by Smith-Kingsmore Syndrome by supporting cutting-edge research and collaboration among medical professionals and strengthening community through worldwide awareness.
Our Values
- Support: Leading with love, kindness, and support in every action we take and every decision we make.
- Service: Supporting our community’s greater good in order to change the world.
- Collaboration: Identifying and leveraging strengths within our community and the medical community we partner with in order to effectively execute our mission.
- Integrity: Treating every individual with respect and honoring our commitments – including using our resources to achieve the greatest possible impact for our community.
- Transparency: Providing transparency to our community explaining where we’ve been and where we’re going.
Our Hope
Our Operations Team
Susan joined Smith-Kingsmore Syndrome Foundation as Executive Director after 16 years at Boston Consulting Group (BCG). At BCG, she worked in both consulting and operations, most recently as its North American Operations Director. In that role, she led strategic and day-to-day operations, overseeing 28 physical locations and over 600 staff. She developed and managed BCG’s COVID strategy and operation implications across all of BCG’s North American offices.
Susan is a native Australian, and lives in Philadelphia with her husband Alex (who is from Brazil), and her three girls Julia, Carmen and Olivia. Carmen was diagnosed with SKS in 2021, and Susan is very excited to serve our SKS community both professionally and personally.
Kristen is the Director of Development and Founder of SKSF. Her 20-year-old 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.
Our Board of Directors
Cass is a board member for SKSF. Over the years, she has watched family and friends with special needs navigate a system that is already very challenging, but even more so when a specific diagnosis is elusive. She is grateful for the opportunity to be a part of SKSF’s work helping to empower families all around the world.
Dan Lepore, Board Member
Eric is a board member for SKSF. Like his wife Nazira, He began working with SKSF after the first SKS Conference in 2019. Once Eric’s son was diagnosed with SKS, he knew he needed to do more, but did not know where to start or what to do. After joining the SKSF, Eric combined his passion for special needs advocacy and mission focus military experience towards SKS fundraising fitness events.
Matt Walsh, Board Member
Mike is treasurer and co-founder of SKSF. When his son was first diagnosed, he began collecting SKS information and connecting researchers and clinicians. Meeting other parents of children and adults with SKS inspired him to start SKSF. He combines his passion for volunteering with his experience working in a corporate environment.
Nazira is a board member for SKSF. She began working with SKSF after meeting President Kristen and Treasurer Mike Groseclose at the first SKS Conference in 2019. Nazira’s son Ezra was diagnosed at age three. She felt compelled to join the SKSF knowing the struggle of the unknown journey towards diagnoses and wanted to help present and future SKS families. She combines her passion for volunteering and medical experience working with current SKS medical experts and helping other families with SKS medical concerns.
Sarah is a board member for SKSF and a Neonatal nurse practitioner. Her passion for empowering families started in the NICU as a Neonatal Nurse Practitioner caring for complex critically-ill infants. 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 SKS global Registry and helps providers connect with SKS specialists across the world.
How to Support Our Foundation
Smith-Kingsmore Syndrome Foundation is a 501(c)(3) charitable organization. To support our mission…
- Please donate now
- Visit our store and buy merchandise
- Join our Awareness Day
- Participate in one of our workouts
- And register with AmazonSmile
Every dollar donated to Smith-Kingsmore Syndrome Foundation goes directly to our programs to encourage research and to create global awareness of Smith-Kingsmore syndrome. Follow our Smith-Kingsmore Syndrome Foundation Facebook page and check back here for updates on our latest activities and fundraisers, and to learn more on how you can help!
If you have any questions, please contact us.
“If you have built castles in the air, your work need not be lost; that is where they should be. Now put the foundations under them.”
– Henry David Thoreau
