The Salla Treatment and Research Foundation ("A STAR for Ben, Inc.") is a 501 (c) 3 tax-exempt charitable organization dedicated to supporting and advancing Salla disease treatments, research, education, awareness, and family networks.
S.T.A.R. was established in 2018 by Ben Foglio’s parents, Jessica and Michael Foglio, to generate scientific and medical research of this rare disease.
The Foundation supports collaborative scientific research in order to accelerate the prospects for effective medical treatments for those affected with Salla.
The Salla Treatment and Research Foundation is driven by an unwavering belief that no disease is too rare to fight, and that with sufficient support, hope, and faith, a small team of committed researchers, families, supporters, and advocates can create meaningful solutions for those impacted by this disease.
A NOTE FROM THE FOGLIO FAMILY
We are excited to embark on this new, rare journey. Together with families and researchers from around the world, we are hopeful to find a viable treatment for Salla disease! The S.T.A.R. foundation has been a remarkable start to the uncertain road that lies ahead, and we couldn’t be more honored to partner with these esteemed doctors and researchers!
When we received Ben’s diagnosis in September of 2017, we felt alone and frightened. Like most families in our situation, we immediately began to research our child’s diagnosis. In the case of SALLA Disease, information was pretty much non-existent. No research website, no family support, no doctors who had done viable work on such a rare, orphan disease. Hopelessness and despair didn’t even begin to scratch the surface of our emotions.
As we pioneer and forge ahead in finding a treatment for Salla, we are humbled by the generosity and kindness of those around us. You have surrounded our family in love and prayers, and you have given us a sense of purpose and hope as we journey through life’s uncertainties.
To our older son Mikey: You have been a true gift as your patience and understanding have no bounds! You are the light of our lives, and God knew what He was doing when you became the older brother to a special needs sibling.
To our precious Ben: Thank you for showing us what it means to truly cherish life and God’s blessings. We didn’t know our own potential until you came along and showed us how to live with humility and grace every day. We are honored to pave this road for research to benefit you, and for those who are diagnosed in the future.
With love and thanks,
Jessica and Michael Foglio
Visit our STAR pages for information on individual families and their updates.