Q&A With The Incoming JSRDF President, Melissa Fields
What inspired you to join the board and when did you begin your volunteer journey with JSRDF?
A long time! I think I officially joined the Board in 2017 on the Family Support Committee. I have two amazing kids- Cady is 22 and in her final year of nursing school. Austin, now 18, is a senior in high school. When they were little, I was a bedside nurse in the NICU. I decided that I wanted to go back for my masters degree to be a pediatric nurse practitioner. I found myself on this wild ride during grad school that ultimately led me into hospice care. I worked for many years in perinatal and pediatric palliative care and hospice as a PNP. That was the hardest and most rewarding job ever! I love meeting people where they are and making sure that families have all the support and resources possible to allow individuals to make the best decisions and live their best lives. At the Minneapolis conference, my mama and I hosted a couple short meetings with siblings of affected individuals. We wanted to make sure that other sibs like my Cady were seen and heard as the amazing siblings they are. That was my first volunteer work with the Foundation. When I joined the Board, I was on the Family Support Committee. Those first few years on the Board were among some of the greatest! Our team helped write content for the website, revamped the Bereavement program and eventually started our Be Brave, Be Bold, and Be You scholarships.
What are your top priorities for the foundation as you begin your term?
Refocus and increase engagement! We have some amazing people on the Board with a strong desire to make a difference for our families. I’m excited to welcome our new Board members and find new ways to plug in volunteers. As a Board, we will also be reassessing our strategic plan and making sure it aligns with our bigger goals. We will be looking at ways to increase fundraising so we can continue to support our families. We hope to increase financial transparency with our bigger community in hopes to help with fundraising, grants and corporate sponsorships.
What areas of the foundation’s work are you most passionate about strengthening or growing?
I think it’s really important to learn more about what our bigger JS community wants and needs. It’s not enough to keep doing what we’ve always done as a Foundation. The world is changing. Between COVID, increases in technology, political changes, and increased awareness about JS, I want our Foundation to keep up! We need to think outside of the box to better meet the needs of our community.
What role do you see the foundation playing in the lives of families year-round?
The Foundation has a huge presence on social media and have become quite saavy at creating amazing conferences. There are TONS of ways that we can collectively be more engaged and support one another on a day to day basis. I would love to find innovative ways to offer virtual and in person ways to bring our families together. Ultimately, a lot of these ideas require resources, including people and finances, that we will have to navigate.
How do you hope to continue building connection and engagement within the JS community?
Storytelling! We all have a story. A connected journey. We are all part of this “club” that none of us asked to be a part of. Our shared experiences bring us closer. Our stories create connections. We have to be willing to ask and willing to listen to our stories to learn from one another and to grow together.
What’s one lesson or value you’ve learned from past foundation leadership that you hope to carry forward?
It’s hard to name just ONE LESSON from our amazing Past President. Stephen Mack has been an amazing mentor and friend. I think there are two things that he has instilled in me. First, advocate loudly. Stephen is always willing to advocate- for our kids, our families, our communities, our doctors and researchers. Even when things are tricky, he stands up for what he believes in. Second, you get out what you put in. Stephen pours his heart into his family, his school, his community, and our JS community. He seems to be always on the go and always thinking about next steps. I’m super grateful to be learning from him still and to call him a friend.
What message would you like to share with JS families and supporters as you begin this next chapter?
Step up and speak up! Step up- we need volunteers and voices. It truly takes a village to do this work. We need people who are willing to serve on committees and fundraise. We need people who are willing to share ideas and raise awareness. There is no role too small. Between time, talents, resources and connections, everyone has something to give.
