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This weekend-long event was designed as a space for teenagers, and their families, navigating RKD to connect, build confidence, and prepare for the transition from pediatric to adult care.
Through engaging discussions, mentorship from young adults with lived experience, support from nephrologists, and dedicated time for both teens and their parents, the program helped bridge the gap between medical transition and emotional readiness.
A New Kind of Experience
Teen Takeover Weekend stands apart from traditional educational offerings. Instead of lecture-style programming, it offered teens and their caregivers a series of connection-driven, age-appropriate sessions that tackled everything from medication management to identity and independence.
Participants explored hard questions and real-life challenges through hands-on activities, peer-led discussions, and a shared focus on community. Sessions like “Unfiltered: Real Talk on Living Your Best Life with RKD,”“Your Next Big Move,” and “Flip, Flop & Pop” created opportunities for reflection, vulnerability, and honest dialogue not just between teens, but between families as well.
With support from Dr. Sreedhar Mandayam, an adult nephrologist and NephCure Specialist and two exceptional young adult patient mentors, Sean Converse (who has IgA nephropathy) and Keyaira Sanders (who has minimal change disease), attendees were given rare insight into what adulthood with RKD can look like and how to get there with support and strength.
A Space to Be Seen and Heard
Eleven teens, aged 15–19, and their caregivers participated in the pilot program, all of whom are affected by rare, protein-spilling kidney diseases including, FSGS, minimal change disease, IgA nephropathy, and membranous nephropathy.
The weekend opened with a welcome dinner and professional photo session to encourage early bonding. On Saturday, programming split into tailored teen and parent tracks, allowing each group to reflect on their individual journeys while building a deeper shared understanding. Creative projects like tie-dye shirts and vision boards added color to deep conversations around transition and responsibility.
Favorite sessions among families were the “Yours, Mine, or Ours?” activity and the “Flip, Flop & Pop,” event where families revealed their responses and popped balloons to spark new conversations about shared care and independence.
Reflections from the Weekend
The event’s emotional impact was echoed in post-session chats, group messages, and feedback collected throughout the weekend:
- “This weekend filled my cup. So grateful.”
- “My soul needed this.”
- “She didn’t realize how much she needed to form these connections.”
- “I feel so grateful for the information I received but I am most grateful that Ace made real connections.”
Parents expressed appreciation for the space to connect with one another and learn directly from young adults who had already walked the path their children are on. Teens found relief in not having to explain themselves, they were simply understood.
Teen Takeover Weekend showed just how meaningful it is to give teens and their families a space that’s built specifically for them. From shared stories to honest conversations, the weekend created a sense of connection and understanding that many didn’t realize they needed.
As one parent put it, “Soul cup is full. We are not alone.”
To learn more about upcoming events and future opportunities to get involved, click here or contact info@nephcure.org.
About NephCure:
NephCure’s mission is to empower people with rare, protein-spilling kidney diseases to take charge of their health while leading the revolution in research, new treatments, and care. Since 2000, NephCure has invested more than $40 million in kidney disease research and helped transform the treatment landscape through advocacy, education, and support. NephCure is a U.S. tax-exempt 501(c)(3) public charity.
