Sibling Panel Summary: Connect + Collaborate Scientific & Family Conference

Summary by Molly Osborne, CSNK2A1 Foundation Intern 

On Saturday, July 19, at the 2025 CSNK2A1 Foundation Connect + Collaborate Scientific & Family Conference, young adult and adult siblings came together for a facilitated discussion led by Education Specialist and certified Sibshop facilitator Jessica Ruth. The session focused on the lived experiences of siblings of individuals with Okur-Chung Neurodevelopmental Syndrome, creating space for honest, real-world conversation.

To encourage the greatest possible candor and psychological safety, we made the intentional decision not to record this session. Siblings were invited to speak freely without concern that their words would live on beyond the room, be replayed, or be shared out of context. This allowed participants to be open about deeply personal experiences and emotions that are often difficult to name or share. Instead, we are sharing a thoughtfully prepared summary that reflects the core themes and insights raised, while honoring the privacy and trust of those who participated.

The panel included five siblings ranging in age from the late teens to mid-twenties. Each grew up with one or more siblings, with at least one sibling diagnosed with OCNDS. Family structures varied, and several panelists shared that they had lived with their sibling with OCNDS for most or all of their lives. Many described being deeply involved in their sibling’s daily life and routines.



The session was exceptionally well attended, with participants filling the room and sitting on the floor to take part. From the outset, the conversation was raw, honest, vulnerable, and emotional. We are deeply grateful to the siblings who shared their experiences and to Jessica Ruth for guiding this first-of-its-kind panel, which opened the door to an important and long-overdue dialogue within the OCNDS community.

Summary of Topics and Themes Discussed

What a typical day looked like growing up

Panelists described daily life as highly structured yet unpredictable, with routines shaped around the needs of their sibling with OCNDS. Mornings and transitions were often the most challenging.

• Helping siblings wake up, get dressed, eat, and prepare for school
• Managing anxiety related to school, sometimes with physical symptoms
• Navigating sleep challenges that made mornings and evenings difficult
• Long mealtimes due to feeding difficulties, sometimes lasting hours
• Gaps in school support requiring tutors, advocacy, or supplemental services
• Afternoons and evenings focused on supervision, shared downtime, and ongoing needs
  

Growing up with many helpers in the home

Many panelists reflected on households with a constant presence of caregivers and helpers, which shaped both family dynamics and their own adaptability.

• Families prioritized caregivers who were passionate and caring
• Helpers rotated frequently, creating constant change
• Poor fits were addressed quickly
• Over time, many helpers became like extended family
• A strong sense of community formed around caregiving
• Siblings learned patience early due to slower pacing and support needs
  

How their sibling’s needs impacted daily life

Daily life often revolved around the sibling with OCNDS, influencing family relationships, independence, and opportunities.

• Plans and activities were frequently adjusted or done independently
• Parents’ attention was often focused on caregiving needs
• Feelings of loneliness were common
• Some opportunities were limited due to supervision needs
• Understanding and acceptance grew with age and maturity
  

How having a sibling with OCNDS shaped who they are

Panelists consistently shared that these experiences deeply influenced their character and worldview.



• Increased empathy, patience, and open mindedness
• Early caregiving responsibilities that built life skills
• Strong adaptability and flexibility
• Heightened awareness of others’ emotions and struggles
• Deep respect and compassion for individuals with disabilities
  

Friends, classmates, and inclusion

Panelists discussed navigating friendships and social inclusion, often becoming intentional about who they invited into their homes.

• Siblings were often introduced naturally to friends
• Friends generally responded with affection and adaptability
• Panelists became selective about who entered their home environment
• Some friends bonded deeply with their sibling with OCNDS
• Inclusion became easier when it was modeled
• Bringing people home could feel stressful due to unpredictability
  

Feeling different from peers

While panelists recognized their family life was different, most described it as simply their normal.



• Differences were acknowledged but not seen as wrong
• Many viewed their experience as positive
• Some limitations were felt when comparing experiences with peers
• Challenges were accepted as part of life
  

Values, personality, and life lessons

Growing up alongside OCNDS shaped panelists’ values and long-term outlook.



• Strong emphasis on kindness, respect, and patience
• Valuing how people treat others over competence or skill
• Career aspirations influenced by helping professions
• Habitual advocacy for siblings and others
• Learning boundaries, forgiveness, and recognizing triggers
  

Advice for parents supporting siblings

Panelists offered thoughtful guidance rooted in lived experience.



• Communication with siblings should be age-appropriate and honest
• Older siblings benefit from more information and involvement
• Small amounts of one-on-one attention matter
• Ask siblings how involved they want to be
• Avoid over-shielding; exclusion can lead to sadness
• Create space to talk openly about emotions and challenges
• Siblings want to help but also need independence and alone time
  

Looking Ahead

This discussion underscored the depth, complexity, and importance of the sibling experience within the OCNDS community. The honesty and vulnerability shared by the panelists made clear that siblings carry their own stories, responsibilities, and needs, many of which have historically gone unspoken.



We hope this conversation is just the beginning of many more opportunities to center sibling voices, create space for shared understanding, and build meaningful support for siblings across all stages of life. As our community continues to grow, these perspectives will be essential in shaping more inclusive family support, research priorities, and community programming.

We are deeply grateful to the siblings who bravely shared their experiences and to Jessica Ruth for guiding this conversation with care, intention, and insight. Their willingness to speak openly not only validated the experiences of others in the room but also helped lay the foundation for a more connected and compassionate OCNDS community.