The 2025 BDSRA Family Support Conference: A Grateful Recap
The 2025 BDSRA Family Support Conference (July 10–14 in Lincoln, Nebraska) was an unforgettable gathering of families, friends, clinicians, industry partners, and more. Here’s a glimpse of the many beautiful moments we shared!
A heartfelt thank you to our Friends of Nicholas—your generosity makes all of this possible. Your support covers travel, lodging, meals, and salaries for our trusted nurses and caregivers, and allows us to hire and sponsor KiddieCorp, the professional childcare agency that brings skilled special-education and preschool teachers to support our team.
We were especially fortunate to receive tremendous support from the Lincoln community. Caring volunteers joined us in the kids’ room, sharing their time, energy, and even personal belongings. Local families went above and beyond: gifting each of us a Nebraska-themed bag filled with treats, donating funds for Friday-night desserts, and lending toys, mattresses, and countless offers of help. Their kindness and thoughtfulness were deeply humbling.
Heart of the Conference: Our Incredible Childcare Team
Thank you to Meghan Kelly, Bridget Kelley, Erin Kelly, Hannah Euler, and Isabella Leguia.
Every day, I am grateful for these remarkable women who are truly the heart of this conference. With the support of Our Promise to Nicholas Foundation Sponsorship- For the past 11 years they have created a safe, loving space where children can play, create, and be cared for while parents connect, learn, and find support. Their dedication, love, and steady hands provide a joyful haven for some of the most medically fragile children—and for every child who walks through the door.
They welcome each child with open arms and endless creativity, offering arts and crafts, toys, music therapy, lots of hugs, and plenty of laughter. Their warmth and professionalism allow parents to attend sessions and breathe a little easier, knowing their children are cherished and safe. Because of them, the children shine, and the conference becomes a place where families feel deeply supported.
Thank you to Amanda Wick, a professional music therapist who joined the childcare room, bereavement groups, and siblings’ sessions throughout the conference this year. Amanda is a true blessing to our community, bringing music’s healing power and connecting with families on so many different levels.
Thank you to Jaime Freedlund for leading the Finding Joy session and bringing her wisdom, warmth, and uplifting spirit to our conference, inspiring families with practical ways to embrace hope and joy.
Thank you to the Southern New Hampshire Quilters, who lovingly created and donated 75 pillowcases for every child and sibling at the conference. Special thanks also to Pat Golden—Nicholas’s Aunt Sarah Dainiak’s mom—and her talented quilting group in South Carolina for creating and donating 15 handcrafted quilts. These gifts brought warmth and comfort to so many children and families.
A Personal Reflection
This year was a little different for me. I wasn’t in the affected childcare room as in past years—the place that has always felt like home to my heart and soul. Now that I am employed part-time with BDSRA as Director of Family Support, I spent more time in sessions and walking alongside parents and families: offering one-to-one support, hosting peer-to-peer groups, speaking during an end-of-life tissue-donation session to share our family’s story, helping introduce speakers for a session on the powerful connection between Batten disease science and music therapy, and joining several bereavement groups throughout the weekend.
Though it was hard to be away from the room that holds so many memories, it reminded me that there are many ways to show up—for the children, for the families, and for our community. I feel it is time for me to begin showing up more for the parents as well, and I’m deeply grateful to those who welcomed me into their conversations and trusted me with their stories.
Thank you all for being part of this extraordinary community we are grateful to continue to carry Nicholas’s spirit forward. We are looking forward to seeing everyone again next year in Chicago 2026!
