ASPIRE Internship Opportunity: CSNK2A1 Foundation Scientific Conference Intern (remote position with travel for conference)
CSNK2A1 Foundation Scientific Conference Intern
December 2024-August 2025
1929 Van Ness Avenue
San Francisco, CA 94109
The CSNK2A1 Foundation is a 501(c)(3) non-profit organization focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome (OCNDS) and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. Our organization’s structure is upheld by four pillars, bolstering our capacity to expedite the journey to treatment: the Board of Directors, Scientific Advisory Board, Parent Advisory Board, and the OCNDS Community.
OCNDS is a rare genetic disorder that was first identified in 2016. OCNDS is caused by a heterozygous mutation in the CSNK2A1 gene, located on Chromosome 20. The gene CSNK2A1 encodes for the alpha subunit of a protein called Casein Kinase 2 (CK2) which plays a crucial role in development. More than 285 patients worldwide have been diagnosed with OCNDS so far. This number is expected to increase with increasing utilization of whole exome sequencing in other regions of the world. There is no definitive treatment for OCNDS yet.
All individuals with OCNDS have some degree of developmental delay and/or differences in brain function including autism spectrum disorder. The most common symptoms are speech delay/inability to speak, motor delay (e.g., walking, feeding difficulties), behavioral challenges (e.g., tantrums, hand flapping, other stereotypic movements), sleep problems due to disrupted circadian rhythm, and other neurologic problems such as low muscle tone (hypotonia), clumsy movements, small head (microcephaly), epilepsy (seizures), and gait abnormalities.
The ASPIRE intern will work under the direction of Gabrielle Rushing, Ph.D. (Chief Scientific Officer), Jennifer Sills, J.D. (Founder and President), and other collaborators as needed to assist in the responsibilities detailed below.
Primary Responsibilities
The CSNK2A1 Foundation seeks a volunteer intern to assist in the planning and execution of the 2025 OCNDS Scientific and Family Conference.
- The purpose of this meeting is to convene all OCNDS stakeholder groups (caregivers, patients, siblings, clinicians, researchers, industry partners) to discuss ongoing research initiatives, facilitate research sample collections, and hold a joint session to crowdsource the top 10 OCNDS research questions that will guide our roadmap over the next 5-10 years.
- We expect approximately 30 researchers/clinicians and 30 OCNDS families to be in attendance. Scientific sessions will cover clinical features, genetics, disease models, drug repurposing, crowdsourcing research questions, and more.
The intern will:
- Meet and interact with leading researchers/clinicians, OCNDS families, and other stakeholders (representatives from Simons Foundation Autism Research Initiative, etc.)
- Gain experience in organizing a joint scientific and family conference for a rare disease, including exposure to non-profit culture
- Provide support in conference planning by facilitating the collection, review, and selection of abstracts including communications with authors and reviewers as needed.
- Provide support for general event planning logistics including travel stipends for early-career researchers.
- On site, the intern will take notes of all conference sessions and write a conference summary that is readily understandable to a lay audience. This will live on the foundation’s website and will be distributed broadly to all OCNDS stakeholders.
- There is an option for formal publication of the conference summary with Dr. Rushing. Example from another rare disease group can be found here.
- On site,
Requirements
- Ability to attend the conference in Denver, Colorado: July 16-20, 2025.
- The conference starts on July 17th, but all staff will arrive July 16th.
- Motivation to serve as a professional representative of a foundation
- Strong writing and project management skills
- Must be a US citizen or permanent resident
- Familiarity with Microsoft Office (Excel, PowerPoint, Word) and Zoom preferred.
Internship Details
- Internship will run from December 2024 through August 2025, with potential to extend pending interest and needs of the organization.
- Internship is remote, unpaid, part-time (1-5 hours per week, variable).
- Hours may increase immediately prior to the conference.
- During the conference events, intern is expected to be available from 8:00am to 8:00pm.
- The foundation will cover travel expenses (airfare, lodging, ground transport).
- The foundation will offer a $500 stipend pending successful completion of conference summary at the discretion of the CSO and President/Founder.
- The intern will interact primarily through email and Zoom meetings although in-person meetings are an option as Dr. Rushing is local to Nashville.
Applications due by noon, Thursday, November 14, 2024
To apply:
- Fill out the following ASPIRE Internship Application found here: https://redcap.link/ASPIREInternship_Application
- Submit a resume and cover letter at the RedCap link above. Please submit documents as pdfs with your last name_CSNK2A1_Resume_Sp 2025 or last name_CSNK2A1_coverletter_Sp 2025
- Set up a meeting with Ashley Brady at (ashley.brady@vanderbilt.edu) prior to the application deadline.
Your information will then be passed along to the organization who will contact you directly to schedule an interview.
For further questions, please contact Ashley Brady (ashley.brady@vanderbilt.edu).
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Please review ASPIRE Internship FAQs: Found here
For further questions, please contact Ashley Brady (ashley.brady@vanderbilt.edu).
Eligibility requirements
- Applicants must be a current Vanderbilt University PhD student or a current postdoctoral fellow.
- All PhD students must have completed all coursework for their degree prior to the start of the internship.
- Biomedical PhD students must also have passed their qualifying exams before the application deadline.
- Students and postdocs may not participate in more than one internship at a time. More than one application may be submitted at a single time, but only one position can be accepted.
- If you are not in a department supported by the BRET office, we will also require that you complete a form guaranteeing PI approval to participate in this program. Please contact Ashley Brady at ashley.brady@vanderbilt.edu for more information.
- If you are an international student or postdoctoral fellow, your visa status may affect your work eligibility. Please contact Ashley Brady (ashley.brady@vanderbilt.edu) to discuss this further.
- Must be authorized to work in the US