Howard Garrison Advocacy Fellow
Marya Sabir
Marya Sabir is a graduate student at the National Institutes of Health Oxford-Cambridge Scholars Program.
Describe your interest in participating in the program.
Sabir: My interest in science policy and advocacy through outreach stems from my time at AmeriCorps VISTA. As a member of the VISTA program, I served as a health care literacy educator for at-risk, justice-involved populations, including probationers and incarcerated individuals, to improve health and health financial literacy by teaching topics such as "understanding health insurance" and "preventive health services." Through a year of discussions in the jails and probation centers, I learned about the community's skepticism of science, a topic that was forefront when I taught about vaccines. Through the Howard Garrison Advocacy Fellowship, I would like to build a foundation for how policy underpins health (literacy) inequities and how we can best promote a scientific ecosystem inclusive of all communities.
After my fellowship, I joined the National Institutes of Health (NIH) postbaccalaureate program. I performed neuroscience research and was selected to participate in the NIH Academy program, an initiative to educate and develop leaders in research and healthcare. During the program, I led outreach efforts to improve health literacy in the unhoused population by designing a curriculum and partnering with local shelters in the Washington, D.C. area to empower the residents with knowledge. Over time, I recognized three important truths: 1) there is an insatiable thirst for knowledge in this community, 2) as the sole educator, I couldn't meet the growing need of the program alone, and 3) education is not enough if there aren't policies in place to ensure we provide wrap-around support to uplift and empower them in their healthcare. As a participant in the Howard Garrison Advocacy Fellowship, I would like to learn more about how policies are drafted and how we involve marginalized stakeholders in decision-making processes.
During my graduate studies, I focused on education outreach by serving as the director of pregraduate mentoring for Project SHORT, an organization dedicated to offering free admissions guidance to underrepresented students in STEM. In this role, I have matched over 1500 applicants with suitable mentors. While this work has been extremely meaningful, I recognized that the demand (mentee applications) always outpaced supply (mentors available to help) and eventually we would have to have difficult discussions on which mentees to prioritize. The Howard Garrison Advocacy Fellowship offers an opportunity to learn how to bring scientists from diverse backgrounds to the decision-making table.
When I began my outreach and advocacy efforts, I quickly learned that outreach is limited by policy and that the people who need to be at the table to ensure policies serve them are not invited. My interest in the Howard Garrison Advocacy Fellowship stems from this. I hope to establish a formal foundation in federal science policy that will help me develop and lead outreach and advocacy organizations to promote equitable access and inclusion in science.
How do you plan to use the knowledge and experience gained through your participation in the Howard Garrison Advocacy Program?
Sabir: I will use the knowledge and experience gained through the Howard Garrison Advocacy Fellowship to advocate for funding to accelerate research in rare diseases more effectively. My goal is to be a voice for rare disease patients and ensure that their needs are heard in institutions that encompass the power to enact change. I am specifically interested in the policy issues: 1) increasing equitable access to genomics-informed clinical medicine in historically excluded groups and 2) increasing awareness of and funding for developing diagnostic modalities and treatments for rare diseases. As a graduate student at the NIH Undiagnosed Diseases Program, I study a rare disease, free sialic acid storage disorder (FSASD), that only afflicts 300 individuals worldwide. While working closely with the Salla Treatment and Research Foundation, I have recognized the desperate need for incentivizing industries to develop and commercialize therapies for the rare disease community. I hope to use the Howard Garrison Advocacy Fellowship's training, including participating in monthly FASEB Science Policy Committee meetings and Capitol Hill Day, to increase my knowledge of how legislation is formed and enacted. Additionally, I would like to learn about possible science policy careers and how I can best incorporate science policy in my prospective career as a physician-scientist. Lastly, I would like to give back to the rare disease community by developing educational materials (e.g., writing op-ed articles about these policies for non-scientific audiences) to ensure they are empowered with this knowledge and can advocate for their communities.
Using no more than 250 words, describe your research as you would to a non-scientist.
Sabir: Just like we have a digestive system that processes what we eat and expels waste, our cells have sac-like structures called lysosomes that break down substances in the cell. Once digested, some of this waste is disposed of while the rest is reused. When these molecular recycling plants don’t work correctly, it can lead to various diseases, including FSASD. In this disease, a mutation in a particular gene prevents a sugar molecule called sialic acid from leaving the lysosome. This causes the sugar molecule to build up like a big pile of trash, which is bad for brain cells and can lead to seizures and problems with coordination and walking. To help us study FSASD, I created a mouse model with one of the mutations that causes the disease in people. This mouse model shows movement problems similar to those of human patients, and just like people with the disease, they have much less of a protein in their brains called myelin, which helps nerve cells send electrical signals. I am now using this new mouse model to learn more about the brain abnormalities commonly seen in people with FSASD and to test therapies. While FSASD is extremely rare, with only 300 known cases worldwide, there are more than 40 other diseases caused by problems with lysosomes. Studying FSASD can not only lead to treatments for those living with this illness but also for the many people living with similar diseases.
Briefly describe any past or present participation in additional career exploration activities, experiences, and/or programs.
Sabir: As a founder and organizing member of the NIH OxCam Program Career Development Seminar Series, I have conducted informational interviews with program alums who are now established in careers in science policy and careers outside of academia. Next, I have honed my science communication skills by leading and participating in several education outreach initiatives, including 1) serving as a teacher and director of Curiologie in the Classroom, an organization of more than 80 volunteers aimed at teaching science classes at a Title I public charter school in Washington, D.C.; 2) serving as a lead teacher at the Carnegie Academy for Science Education, tasked with teaching students from historically excluded communities; and 3) as a graduate student, I meet with the families in the Salla Treatment And Research Foundation and provide lay summaries of our research progress. These experiences taught me how to communicate science to different audiences, ranging from first-graders to patient families. While I do not have formal experience with structured science policy activities, during my time with AmeriCorps VISTA, I worked on implementing the Affordable Care Act in the Phoenix area by conducting metrics analyses and administratively organizing an in-reach calling campaign. In the Howard Garrison Advocacy Fellowship, I hope to learn immensely from the educational and interactive workshops and activities such as Capitol Hill Day. Through this opportunity, I hope to be a voice for historically excluded groups ranging from educational to health disparities, especially in rare diseases.
Marya Sabir is a member of American Society for Biochemistry and Molecular Biology, a FASEB member society.