ASPIRE Internship: Patient Registry and Biobank Intern, The DADA2 Foundation, Nashville, TN (remote)
ASPIRE Internship Opportunity:
DADA2 Foundation
Patient Registry and Biobank Intern
(Remote)
appx March-May 2023
Are you curious about career opportunities in the non-profit and rare disease world? How about the intersection of biotech and these trailblazing organizations who are finding treatments for diseases not yet treatable? Ph.D. trained scientists can provide an invaluable perspective and skill set to non-profit organizations looking to change outcomes for patients around the world. The DADA2 Scientific Intern will have the opportunity to contribute to this growing field of science, biotech and advocacy, while also networking with professionals in the rare disease non-profit space.
ABOUT THE FOUNDATION
The DADA2 Foundation is the only organization dedicated to finding a cure for DADA2 (deficiency of adenosine deaminase 2), a rare genetic disease that usually starts in childhood. It can cause recurrent strokes, severe systemic inflammation, immune deficiency, and damage to many of the body’s tissues and organs.
The Foundation was founded in 2016 by parents of DADA2 patients – Dr. Chip and Brenda Chambers – who focused on fostering a collective knowledge and understanding of DADA2. Dr. Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee. He continues to hold his clinical faculty appointment at Vanderbilt, and he operated and taught residents at the Veterans Affairs Medical Center. After his children’s diagnosis, Dr. Chambers contacted every clinician and scientist he could find with experience or knowledge related to DADA2 and began connecting them to each other and to other patients.
The mission of the DADA2 Foundation is to drastically accelerate a cure for DADA2, increase awareness and timely diagnosis, and ensure that patients around the world and their medical teams have access to the most up-to-date treatments. They have held three medical conferences to date, with a 4th happening in October 2023 in Washington DC. The last conference in 2020, held virtually, drew 300+ doctors and scientists from 25+ countries including Saudi Arabia, China, European nations and other locations throughout the globe. Approximately 25 specialties were represented . We also hold a patient conference every other year with 100+ family members.
Ultimately Dr. Chambers aims to use what he learns through the experiences of the DADA2 Foundation to advance rare disease research and therapies for the more than 7,000 rare diseases affecting patients worldwide. In 2019, the DADA2 Foundation moved closer to their goal as they were the recipient of a Rare as One grant from the Chan Zuckerberg Initiative. As a Rare as One grantee, The DADA2 Foundation is one in a community of 30 rare disease foundations who are leveraging their collective knowledge and resources of the CZI to make unprecedented headway in the rare disease space.
Today, the Foundation is launching a Patient Registry and also pursuing relationships with biotech and pharma companies to identify current and future therapies that can treat and/or cure DADA2.
To learn more, visit http://www.dada2.org/ and https://chanzuckerberg.com/science/programs-resources/rare-as-one/.
CORE INTERNSHIP PROJECTS
We are looking for an intern to work with us to support our efforts in working with biotech and pharma. You will apply your scientific knowledge in a business setting to help bring possible therapies as tests for treatments. In addition, as needed, you will assist in efforts to launch the patient registry, host an international conference and support other efforts of the Foundation. The Scientific Intern is a core role in the DADA2 Foundation, especially in this growth stage. The intern will be an integral part of the team, learning and participating in the entire scope of the foundation’s efforts.
The participant will:
- Offer up-to-date scientific advising to the Foundation.
- Review scientific literature for data to support various scientific projects. This will include searching the scientific literature using public access software such as PubMed, identifying relevant literature, entering literature into a citation management software, and, where possible, downloading PDFs of the articles. There will be weekly meetings to monitor progress and modify searches according to outcomes.
- Assist in the transfer and organization of scientific data associated with the acquisition of a drug development project.
- Various one-off questions and projects associated with DADA2 Scientific programs.
- Meet and learn from professionals who have a wide variety of roles in the philanthropic and science/tech/business sector
- Be an active participant in DADA2 Foundation meetings, covering all aspects of non-profit administration. Staff meetings are every other Friday at 9am – 10:30 am central.
- Meet and interact with scientists and clinicians who are invested in rare disease research
- Learn about topics relevant to a patient advocacy community and unique considerations for rare diseases
- Learn about working in the non-profit/rare disease sector
- Improve their ability to communicate complex scientific information to a mixed audience
The ideal candidate will:
- Be able to work independently
- Take initiative, ask the next question, and “own” projects
- Ramp up to carry a working interest in staying up to date on the science of DADA2
- Be able to clearly explain complex scientific topics in close-to layman’s terms
- Demonstrate skills in and enjoyment of the communications aspects of sharing science with a scientific and non-scientific community
- Be flexible, understanding the iterative and dynamic nature of a growing and small organization – take on new tasks as needed
- Be enthusiastic about communicating with diverse audiences
- Maintain open and honest communication with team members
BENEFITS TO CANDIDATE
This internship should enhance the intern’s understanding of:
- Non-profit organizations
- Rare disease
- Biotech, pharma and drug development
- Patient Registries and Biobanks
- Patient reported outcomes
- Challenges in international research
- Challenges in rare disease research
- Community building
- Collaborative research network development
- Development of shared infrastructure
Internship details
- The intern will work closely with Dr. Chip Chambers (President and Co-Founder), Lex Cowsert, Ph.D. (Chief Scientific Officer) and Julie Williams, MS, CGC(Research Engagement Director). The internship will run for 12 weeks, beginning in immediately, with potential for mutual agreement to extend.
- Time commitment will be no more than 10 hours per week, at times less. Staff meetings are held every other Friday at 9am, with additional meetings necessary during business hours. The intern will work remotely along with the rest of the team.
- Internship will be paid at $20 an hour, with intern required to track hours worked with detail at the quarter hour.
Deadline to Apply: noon, Thursday, March 2, 2023
To apply:
- Fill out the following ASPIRE Internship Application found here: (https://redcap.link/ASPIREInternship_Application)
- Submit a resume and cover letter to Ashley Brady at ashley.brady@vanderbilt.edu (Please submit documents as pdfs with your last name_DADA2_Sp2023 in the file name and with subject line: ASPIRE Internship: DADA2_Sp2023).
- Set up a zoom meeting with Ashley Brady via https://calendly.com/ashley-brady 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).
——————-
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