Ben
This is the English version, you find the original version below
Turning Challenges into Miracles:
The Extraordinary Journey of STAR Foundation and Our Battle with Salla Disease
In the vast landscape of rare genetic disorders, our family's journey stands out as an inspirational tale of resilience, determination, and the power of collective effort. The STAR Foundation, an organization dedicated to advancing research and treatment for rare diseases, emerged as a beacon of hope from the challenging circumstances surrounding my son Benjamin's diagnosis of Salla Disease in 2017. This is a story of rare circumstances, unwavering commitment, and the miraculous collaboration of individuals driven by a shared purpose.
I am Jessica Klein-Foglio, an accomplished opera singer and a parent to Benjamin. Little did I know that my background in music would eventually intertwine with the formation of STAR Foundation, turning our personal tragedy into a source of strength for countless families facing rare disorders.
Ben's initial diagnosis of Cerebral Palsy in New York City led us on a genetic journey that would change the trajectory of our lives. Thanks to a pediatrician friend, I was introduced to Dr. Helio Pedro, a top geneticist in New Jersey. Dr. Pedro's suspicion of Salla Disease based on elevated sialic acid levels in Ben's urine set the stage for a pivotal moment. However, due to insurance limitations, we found ourselves at Columbia University, where a twist of fate connected us with David Halperin, a friend with a profound story of his own.
David, having witnessed the successful establishment of a research foundation for Neiman Pick disease two decades earlier, became the catalyst for the inception of STAR Foundation. His introduction to Jonathan Jacoby, who had navigated a similar path with his own foundation, provided invaluable guidance. The chain of connections led us to Dr. Steven Walkley and the IDDRC Gene Team at Einstein University's Rose F. Kennedy Center.
In November 2017, our family became the first to be seen at the IDDRC, a groundbreaking initiative aimed at connecting families with researchers specializing in their child's condition. Dr. Walkley, along with Dr. Melissa Wasserstein and Dr. Kostantine Dobrenis, not only explained Ben's diagnosis but also provided a sense of belonging and support. Inspired by our experience, Dr. Walkley proposed the idea of starting a rare disease foundation, planting the seed that would later blossom into STAR Foundation.
The journey to establish STAR Foundation was not without its challenges. Overcoming grief and fueled by a desire to transform adversity into positive action, I began the process of obtaining official 501(c)3 status. With the support of my connections in the music industry, I secured Grammy-winning jazz musician John Patitucci to contribute to annual Salla research concerts.
The foundation's financial management found a capable leader in my uncle, Ken Klein, an experienced math teacher and professor. His meticulous approach ensured that every dollar raised was allocated judiciously to advance research efforts. In January 2018, a gathering of dedicated individuals, including John Patitucci, David Halperin, Dr. Steve Walkley, and Ken Klein, officially birthed "Salla Treatment And Research (STAR)."
Our foundation's journey reached new heights in January 2019 when I shared our story at the World Symposium of Rare Diseases in Orlando, Florida. My presentation not only shed light on the formation of STAR Foundation but also placed Salla Disease in the spotlight among the world's top researchers. Dr. Chet Whitley's invitation to present at the Doctor Symposium elevated the foundation's visibility, attracting the attention of Dr. Raymond Wang and his team, further expanding STAR's collaborative efforts.
Amidst every obstacle, STAR Foundation experienced a series of serendipities – the right individuals appearing at the right time, joining forces to propel the foundation forward. While many rare disorder foundations struggle to secure even a single scientist, STAR has flourished with over 42 active researchers contributing to our cause.
As I reflect on our journey with Ben and the foundation's accomplishments, I recognize the extraordinary nature of my son. Ben, diagnosed with Salla Disease, has become the driving force behind STAR Foundation, giving meaning and purpose to a life touched by a rare disorder. Our foundation's success serves as a testament to the belief that, even in the face of adversity, miracles can emerge when passionate individuals come together with a shared goal of making a difference in the world of rare diseases.
