Research & Stakeholder Engagement Intern Description

Overview

The CSNK2A1 Foundation is a 501(c)(3) nonprofit dedicated to advancing research and improving outcomes for individuals with Okur-Chung Neurodevelopmental Syndrome (OCNDS). This work is being conducted in collaboration with the CSNK2B Foundation, whose mission is to advance awareness, research, and treatment development for individuals affected by CSNK2B-related neurodevelopmental disorders.


We are seeking a part-time Scientific Intern to support a patient-centered research initiative that includes both virtual engagement activities and participation in a multi-stakeholder convening (virtual and in-person components). Participation in the in-person convening (December 2–4, 2026, Denver, CO) is expected; travel costs will be covered by the Foundations. This initiative is supported through a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award, which funds stakeholder-driven efforts to build capacity for patient-centered comparative clinical effectiveness research (CER).


The project brings together stakeholders across CSNK2A1-related neurodevelopmental disorder (CSNK2A1 NDD, also known as Okur–Chung Neurodevelopmental Syndrome/OCNDS) and CSNK2B-related neurodevelopmental disorder (CSNK2B NDD, also known as Poirier–Bienvenu Neurodevelopmental Syndrome/POBINDS) communities.


This work will support the co-development of a shared research agenda and cross-community lexicon grounded in lived experience and comparative effectiveness research (CER). The project engages caregivers, clinicians, and researchers to align priorities and build infrastructure for future patient-centered research. The intern will work closely with foundation leadership and staff, as well as a network of clinicians, researchers, and caregiver stakeholders, gaining exposure to multidisciplinary collaboration in patient-centered rare disease research. This role is ideal for a student interested in rare disease, translational research, patient advocacy, and/or stakeholder-engaged research.

Timeline

  • Application Deadline: May 28, 2026
  • Interviews: June 6–12, 2026
  • Start Date: June 15, 2026
  • End Date: February 28, 2027


The intern will begin prior to key grant-defined summer milestones and contribute to foundational work leading into the December 2026 convening. There may be a need for extension beyond the stated end date to support manuscript development, depending on project needs and intern availability.

Compensation

$1,000 total stipend; Paid in two installments, contingent on completion of agreed-upon deliverables:


  • $500 (July 2026): upon completion of initial literature synthesis, data curation, and early lexicon contributions aligned with interim reporting
  • $500 (February 2027): upon completion of final deliverables, including convening synthesis, research agenda drafting, and lexicon development

Responsibilities

  • Aggregate and synthesize literature related to:
  • outcome measures in neurodevelopmental disorders o comparator conditions relevant to CSNK2A1 and CSNK2B NDD
  • patient-centered and comparative effectiveness research (CER) frameworks
  • Support development of a cross-community research lexicon
  • Assist in synthesizing outputs from stakeholder engagement activities and the virtual convening
  • Contribute to drafting: 
  • shared patient-centered research agenda
  • summary and dissemination materials
  • manuscript content for publication 
  • Support coordination and administrative activities, including:
  • communicating with stakeholders (e.g., scheduling emails, follow-ups, reminders)
  • tracking completion of required participant trainings
  • collecting and organizing participant information (e.g., bios, headshots, affiliations)
  • maintaining organized records of engagement and project materials
  • Collaborate with foundation staff, clinicians, and research advisors in a remote team environment

Expected Time Commitment

  • Variable commitment over the course of the project, ~2–10 hours per week, depending on project phase
  • Workload will fluctuate, including:
  • Lower commitment early on during onboarding and initial literature review
  • Moderate, consistent engagement during summer and early fall to support core deliverables
  • Higher-intensity periods leading up to key milestones, including: 
  • virtual Q&A session
  • December 3rd in-person convening
  • major deliverable deadlines (lexicon drafts, research agenda, reporting) 
  • Intern should be available for:
  • periodic team meetings
  • timely communication
  • increased responsiveness during milestone-driven periods
  • Remote except for the December convening; flexible scheduling, with the expectation of reliability during critical phases

Reporting & Collaboration

The intern will report to Gabrielle Rushing, PhD, Chief Scientific Officer, CSNK2A1 Foundation. The intern will work closely with a multidisciplinary team across both foundations, including:

  • Jennifer Sills, President & Founder, CSNK2A1 Foundation
  • Carly Krull, PhD, Scientific Program Associate, CSNK2A1 Foundation
  • Beth Chaffin, Operations Manager, CSNK2A1 Foundation
  • Scott Ashley, PhD, Scientific Director, CSNK2B Foundation
  • Denise Scott, Executive Director, CSNK2B Foundation
  • Heather Jackson, Board Chair, CSNK2B Foundation

Qualifications

  • Currently enrolled in or recently completed a graduate-level program (Master’s or PhD) in:
  • neuroscience
  • genetics
  • public health
  • psychology
  • biomedical sciences or a related field 
  • Demonstrated experience with:
  • reviewing and synthesizing scientific literature
  • writing in a scientific or academic context
  • Strong analytical and critical thinking skills, with the ability to interpret and integrate findings across studies
  • Excellent written communication skills, with attention to clarity, structure, and audience
  • Ability to work independently, manage deadlines, and contribute in a remote, collaborative environment
  • Interest in rare disease, neurodevelopmental disorders, or patient-centered research
  • Ability to travel to Denver, CO (December 2-4th, 2026); foundation will cover travel costs

Application Requirements

  • Please submit all materials to: research@csnk2a1foundation.org by May 28th, 2026
  • Resume or CV
  • Short statement (maximum one page) including:
  • Why this project interests you
  • Any relevant experience

Opportunities & Learning

This internship offers hands-on experience in patient-centered rare disease research, with exposure to both scientific and stakeholder-engaged approaches. Interns will have the opportunity to:



  • Develop skills in scientific literature review and synthesis, particularly in the context of rare neurodevelopmental disorders
  • Gain experience with patient-centered and comparative effectiveness research (CER) frameworks
  • Contribute to the development of a cross-community research lexicon and shared research agenda
  • Engage with a multidisciplinary network of clinicians, researchers, and patient advocacy leaders
  • Participate in the planning and synthesis of a multi-stakeholder convening
  • Build experience translating complex scientific concepts into accessible, stakeholder-informed outputs
  • Opportunities for authorship may be available depending on the scope and quality of contributions.
  • Authorship will be determined in accordance with standard academic guidelines (e.g., ICMJE criteria)
Download Research & Stakeholder Engagement Intern PDF