Every two years there is a shift in leadership here at the Joubert Syndrome and Related Disorders Foundation. New members are selected to join the Board of Directors beginning at the biennial conference in July and other members cycle off the board.
We wanted to take a moment to celebrate some of the board members who are leaving. These individuals have all volunteered their time, talents, and vision in service of our community. We asked them to reflect on their terms and why this work has been meaningful to them. Here is what they had to share.
Eric Swenson
Role: Past President
What I am most proud of achieving while on the board: The rebranding of the foundation, including our logo and website. While there is still a lot of work to accomplish with our website, primarily adding valuable content for our community, this was a pretty profound and exciting change for us. The amount of merchandise you see people wearing or using is an exciting way to spread awareness.
What I love most about the JSRDF: Our focus on supporting our families. If you have ever been to a conference and seen the amount of love that goes around, then you know what I’m talking about. If you haven’t, then I strongly encourage you to experience it. Utilize the sponsorship program if you need assistance getting there.
Ayah Young
Role: Chair of Communications Committee
What I am most proud of achieving while on the board: While serving on the board and as the Communications Committee (Comm Comm) chair, I’ve been proud of how my team executed communication campaigns for our first two annual JS Awareness Months and 31k in 31 days campaigns, and launched/maintained the website blog. At one point Comm Comm was essentially a team of one, and I’ve been delighted to watch it grow to a core of four dedicated and talented members. (We’re always looking for more! http://tinyurl.com/jsrdfvolunteer)
What I love most about the JSRDF: The JSRDF unites JS-affected families who can otherwise feel very alone. It is a gift to be able to share physical space at conferences, and digital space in our Facebook groups. When I interact with our families, I feel understood and validated in ways that just doesn’t happen anywhere else. Having this community to grieve and celebrate with is a huge source of comfort for our families throughout the world.
Amanda Tulumalo
Role: Chair of Family Support Committee
What I am most proud of achieving while on the board: I am most proud of the work myself and the Family Support Committee have done over the past 4 years to get some wonderful supports in place for our JS community. Welcome packets for new families, small financial gifts to families in times of crisis, and personalized bereavement gifts. I’m really excited that the committee has begun the process of developing scholarships for individuals with JS and medical grants for families!
What I love most about the JSRDF: What I love most about the JSRDF are the close friendships I have made with other parents, and the friendships my young adult and teenage sons have made with other young people who also have JS.
Ann Pence
Role: Family Support Committee
What I am most proud of achieving while on the board: I love that we got the Family Support Committee up and walking. I do feel that it still has a long way to go. I know we need a better way of welcoming new families into this amazing family! I loved being part of the board and can’t wait to see how far the future will bring the board.
What I love most about the JSRDF: I love that we are one family striving for bigger and better for our amazing families.
Meghan Krystyniak
Role: Family Support Committee
What I am most proud of achieving while on the board: I’m so proud of how far the board came during my term. I’m most proud of the Family Support Committee and everything that we had implemented to not only welcome and support our new families but also our existing ones as well.
What I love most about the JSRDF: The sense of family and belonging. Our community is amazing and the support we receive from each other is amazing.
On behalf of the entire JSRDF community, we thank you, Eric, Ayah, Amanda, Ann, and Meghan for your service!
