ASPIRE Internship: Patient Registry and Biobank Intern, The DADA2 Foundation, Nashville, TN (remote)
The DADA2 Foundation
Nashville, TN (REMOTE)
Patient Registry and Biobank Intern
Are you curious about career opportunities in the non-profit and rare disease world? 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 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 operates and teaches 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 two medical conferences to date, with a 3rd happening in November 2020 via virtual format. The last conference in 2018, held in Washington D.C., drew 123 doctors and scientists from 25 countries including Saudi Arabia, China, European nations and other locations throughout the globe. Approximately 25 specialties were represented with 93 patients and their families in attendance.
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.
To learn more, visit http://www.dada2.org/ and https://chanzuckerberg.com/science/programs-resources/rare-as-one/.
CORE INTERNSHIP PROJECTS
Do you want to gain experience in patient-driven science and consider perspectives of clinicians, researchers, and patients? Do you want to connect with a vibrant community of passionate advocates for individuals suffering from a wide range of rare diseases? 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:
- Serve as Scientific Advisor to the Foundation
- Perform primary source research (internet searches and webinars) and secondary source research (meetings with non-profits and registry platforms)
- Drive establishment of patient registry and biobank – ***see notes below
- Stay up-to-date on relevant research
- Prepare communications for various purposes (written documents, PowerPoint presentations)
- Represent the DADA2 Foundation at CZI-sponsored events like community calls or capacity building workshops
- Meet and learn from professionals who have a wide variety of roles in the philanthropic sector
- Gain exposure to the Chan Zuckerberg Initiative
- Be an active participant in DADA2 Foundation meetings, covering all aspects of non-profit administration
- 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
***Immediately, the DADA2 Foundation is looking to establish a patient registry, bringing together the medical history of patients around the world. Down the road, they are also seeking to establish a biobank of patient samples that can be used in research studies to develop new therapies for DADA2 patients and to better understand the function of ADA2 in humans. Specific goals are:
- Provide critical insight on patient registry platforms and biobank services
- Communicate complicated research topics to audiences that include non-scientists, patients, and families
- Contribute valuable perspectives from a research scientist to the foundation
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
- 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
- The mission and goals of the Chan Zuckerberg Initiative
- The intern will work closely with Dr. Chip Chambers (President and Co-Founder) and Kristen Hayner (Director of Communications and Organizational Strategy).
- The internship will run for 12 weeks, beginning in November 2020 through January 2021, with potential for extension after review.
- Time commitment will be 10 hours per week.
- The intern will work remotely
- Internship will be paid
Deadline to Apply: noon, Friday, November 20, 2020
- Fill out the following ASPIRE Internship Application found here: https://www.surveymonkey.com/r/DADA2_Fa2020
- Submit a CV and cover letter to Ashley Brady at firstname.lastname@example.org (Please submit documents as pdfs with your last name_DADA2_2021 in the file name and with subject line: DADA2 2020. The candidate should describe qualifications and interest in the cover letter.
- Schedule an advising meeting with Ashley Brady via https://calendly.com/ashley-brady prior to the application deadline.
Your information will then be passed along to the host who will contact you directly to schedule an interview.
- 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 email@example.com for more information.
- If you are an international student or postdoctoral fellow, your visa status may affect your work eligibility. Please contact Ashley Brady (firstname.lastname@example.org) to discuss this further.