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SRAI Off the Clock: Volunteering at the Children’s Rare Disorders Fund

I have been a research administrator for over 15 years, and I have always found my work to be incredibly rewarding. I love helping researchers get the funding they need to conduct their important work, and I am proud to play a role in advancing scientific discovery at Boston Children’s Hospital.

However, I also believe that it is important to give back to the community. I am passionate about helping children, and I was excited to find an opportunity to volunteer at the Children's Rare Disorders Fund (CRDF) on Linkedin. CRDF is a non-profit organization that provides funding and support to researchers working on rare diseases. My daughter Liesl was born with a rare genetic disorder. It is so rare that it is not even listed on the NIH Rare Disease website, and there are no community or parent led organizations working on her disease. 

I started volunteering at CRDF, and I have been helping with a variety of tasks, including:

• Researching rare disease funding opportunities
• Writing grant proposals
• Managing grant budgets

I have learned a lot about rare diseases and the challenges that researchers face in conducting research on these diseases. I have also had the opportunity to meet some amazing people who are dedicated to making a difference in the lives of children with rare diseases. Volunteering at CRDF has been a rewarding experience. It has given me the opportunity to use my skills to help others, and it has made me feel good about giving back to the community. I encourage other research administrators to consider volunteering at their favorite non-profit organizations. It is a great way to use your skills to make a difference in the world.

Here are some of the ways that research administrators can give back by volunteering:

• Manage grants and other funding: Research administrators have experience managing grants and other funding sources. They can use their skills to help non-profit organizations secure the resources they need to carry out their work.
• Provide administrative support: Research administrators have experience with a variety of administrative tasks, such as budgeting, scheduling, and managing records. They can use their skills to help non-profit organizations run more efficiently.
• Provide technical assistance: Research administrators often have expertise in specific areas, such as research ethics, data management, or grant writing. They can use their skills to help non-profit organizations improve their research practices.
• Serve on boards and committees: Research administrators can use their experience and expertise to serve as a board or committee member for non-profit organizations. This can help to shape an organization's mission and goals, and ensure that it is effectively carrying out its work.

If you are a research administrator who is interested in volunteering, there are many resources available to help you get started. You can search for volunteer opportunities online, or you can contact your local non-profit organizations to see if they have any openings. Volunteering is a great way to give back to your community and to make a difference in the world. If you are a research administrator, I encourage you to consider volunteering in your spare time.

Authored by Sabrina Heisey, Program Manager, Psychiatry Research
Boston Children’s Hospital