President Stephen Mack’s Reflections & Impact
As Stephen Mack prepares to conclude his term as President of the Joubert Syndrome & Related Disorders Foundation (JSRDF), we sat down with him to reflect on his time in leadership on the JSRDF Board of Directors. Stephen has been a steadfast advocate for our community, bringing both a servant’s heart and a leader’s resolve to his role.
His journey is one of giving back, of building connection, and of ensuring that the foundation remains strong for years to come.
Here’s what he had to share about his experiences and hopes for the future of JSRDF.
What inspired you to join the JSRDF Board of Directors?
I became involved when Izzy was 7 years old — and for me, serving in a volunteer way is a chance to give back for all that was given to my family in terms of love and support from our JS family. We have to be there for each other, and this is the best way I know how to do that.
How has being on the board deepened your connection to the JS community?
It has given me the chance to see, hear, and help new families who find themselves faced with a scary diagnosis. It also reminds me always that we are family — a diagnosis brought us all together, and now we are on this journey together.
What skills or experiences did you initially bring to the board — and what did you gain from the experience?
I have volunteered in many capacities in my life, and I think I brought a deep sense of service and servant leadership to the role, which allowed us to navigate a few rough moments as a foundation over the years. I have learned an enormous amount about nonprofit management and, moreover, I continue to learn about new advances in research for our JS community.
What would you say to someone considering applying for a board position or as a committee volunteer?
Prepare yourself to make a commitment. It’s not a career and it’s not a 24/7 commitment, but the foundation needs you to be present and engaged. Be sure to discuss it with your family, and know that the expectation is that you dedicate volunteer time to the cause.
What are your hopes for the foundation’s future, and the role future board members will play in it?
I see a good and strong future for the foundation, and knowing that it will be there for families well beyond my own service and family is heartwarming. We need to continue to strengthen the financial pillars of the foundation so that it remains a solid advocate for our families. Future board members will carry that torch forward with passion and dedication.
Any advice for new board members stepping into leadership roles for the first time?
As a leader, be prepared to lead and be prepared to make decisions that are both easy and tough. Prepare to be criticized, but make sure your agenda is not a personal one — it must always be about what is best for the foundation and all of our families.
