Dr. Tanya Stevenson joined MDF in January 2020, bringing with her nearly 20 years of hands-on experience leading mission-driven nonprofit organizations and driving large-scale strategic initiatives. Her expertise in organizational development, program design and evaluation, advocacy, and community engagement are complemented by her long history of successful collaborative work with diverse stakeholders.

Dr. Stevenson joins MDF after serving as President and CEO of Breathe California Golden Gate Public Health Partnership, a century-old nonprofit working to eliminate lung disease through advocacy, education, and direct services. Prior to Breathe California she worked with Girls Incorporated of Alameda County, the New York City Department of Health, American Cancer Society, National Evaluation AIDS Education and Training Center (AETC), as well as the New York/New Jersey AETC at Columbia University. After earning her Bachelor’s degrees in Psychology and Women’s Studies at UCLA, she went on to receive her Doctorate of Education and Master of Public Health degree in Sociomedical Sciences from Columbia University.

Tanya is thrilled to join the MDF family and ready to advance our mission. She invites you to reach out to her directly to share how you believe we may continue to expand our reach and maximize our impact!

Malia joined MDF as the Communications Intern for the summer of 2025. Motivated by the opportunity to combine her interests in media and health advocacy, she supports the Foundation’s mission by developing strategic digital content that raises awareness and deepens engagement within the myotonic dystrophy community. She is currently pursuing a degree in Media and Communications with a minor in Medical Humanities at Earlham College. Malia is passionate about using storytelling, design, and digital media to promote health equity and improve access to information, particularly within underrepresented communities.

Danny joined MDF as the Myotonic Dystrophy Family Registry (MDFR) Data Intern in 2024. Motivated by the opportunity to apply his education to positively impact those living with myotonic dystrophy, he has analyzed de-identified registry data to uncover trends and geographic patterns that help guide resource allocation for the DM community.

Currently pursuing a degree in Biology and Statistics at UC Davis, Danny is passionate about transforming complex datasets into meaningful insights. In his free time, he enjoys playing basketball and learning new languages, including Mandarin and Korean.

Juan Arboleda joined MDF as a Public Health Resource Development Intern in 2024. He holds a Bachelor of Science in Biological Sciences with a minor in Disabilities in Society from the University of Florida, and is currently a PhD candidate in the Genetics & Genomics graduate program at the UF Genetics Institute. Juan’s passion for advocacy and accessible environments was sparked during his time working at the Disability Center on campus. His journey into myotonic dystrophy research began as a technical assistant in Eric T. Wang's lab. As co-founder and president of the NeuroGenetics Student Organization (NGSO) at UF, Juan leads outreach efforts to inspire the next generation of scientists. At MDF, he is working on updating the toolkit to make information more accessible and engaging based on community feedback. Juan is thrilled to contribute to MDF’s mission and enjoys making science more accessible and fun for people.

Scarlett joined MDF in May 2024 as Director of Development. With a wealth of experience in nonprofit fund development and a background in science communications, she is enthusiastic about contributing to MDF’s mission of Community, Care, and a Cure. Scarlett is committed to advancing global health through community-centered strategies and initiatives. She is passionate about raising awareness and revenue through authentic storytelling and relationship-building. She holds a BS in Journalism from Boston University and an MA in International Studies from University of Denver. Scarlett lives in the San Francisco Bay Area. She has a life-long love of travel and reading, and she enjoys bike riding with her family.

Lucie joined MDF in March 2024 as our Senior Manager of Community Engagement. Coming from years working in community organizing and program management, she is excited to join a team with such a focus on building community and care programming and initiatives. While working in the non-profit sector as a program manager, Lucie found her passion in supporting volunteers showing up for their communities. Centering the lived experience of volunteers and the communities they serve allows Lucie to build and strengthen relationships that lead to effective and long-lasting community support. She earned her Bachelor of Science in Psychology from Allegheny College, and spends her free time reading, walking, and volunteering in her hometown of Cleveland, Ohio.

Mindy Kim officially joined the MDF team as Registry Outreach Specialist in March 2023. Since her diagnosis of DM1 in 2010 she has become an active community member and advocate. In her spare time she proudly serves as a volunteer to facilitate the MDF Support Group for North & South Carolina, while also leading the Supportive Facebook Chat for Adults, as well as Friday Night DM Happy Hour. In her new role as Outreach Specialist for the Myotonic Dystrophy Family Registry (MDFR), she is working hard to update and expand the registry. You might be fortunate to receive a phone call from Mindy about updating your registry profile. As research and trials in DM are advancing quickly, she wants to ensure your profile is up to date so you don’t miss any opportunities to participate in helping change the future of myotonic dystrophy!
 

Dr. Andy Rohrwasser joined MDF in November 2023. He brings with him a broad and diverse background in academic science, venture backed start-ups and public health. Andy’s domain expertise and passion are rare diseases, genetics and genomics, and newborn screening. Andy implemented gene agnostic, next-generation sequencing as a universal second tier newborn screening modality. Under his leadership, Utah was the first state in the US to implement population wide screening for Spinal Muscular Atrophy (SMA).

Andy serves as an adjunct associate professor in pediatric neurology at the University of Utah, where he also received his PhD in Human Genetics and an MBA. As the laboratory director for the Utah Public Health Laboratory he oversaw multiple operational units with diverse regulatory requirements, customer bases and stakeholders.

Andy was the principal investigator of multiple, multi-year research projects funded by HRSA, CMS, APHL, and CDC. He serves on multiple advisory committees for the CDC and APHL, and he has served as reviewer for NIH study sections, and multiple scientific journals as well as a member of the Utah IRB.

Genevieve joined MDF in September 2023 as our Communications Associate. MDF’s community-first approach and focus on comprehensive holistic care is what motivated Genevieve to join the team. Her professional background includes experiential education and program coordination for communities affected by chronic illness and rare diseases such as sarcoidosis. She excels at designing meaningful communications that promote health and empower communities and is excited to develop content that will provide value and truly support people affected by myotonic dystrophy. Currently a resident of North Carolina, she graduated from the University of North Carolina at Charlotte with a Bachelor’s of Science in Public Health and a minor in Outdoor Leadership, and spends her free time outdoors, typically with her charming dog, Rayla.

Emily Romney joined MDF in June 2023 as our Special Projects Manager and became our Community Education Manager in 2024, and our Senior Manager of Community Education in 2025. After completing her undergraduate degree in Public Health, she recently earned her Master of Public Administration degree with emphases in nonprofit management and social impact. While working in the nonprofit health sector as a program coordinator, she deepened her passion for strengthening communities through empowerment and advocacy. Emily interned with MDF in the summer of 2022, where she worked on gathering community feedback for the evolution of MDF’s Toolkit. She was also fortunate enough to attend MDF’s annual conference in San Diego, CA. Impressed by MDF’s commitment to ensuring the DM community remains at the core of each of the organization’s decisions, she was thrilled to join the MDF team again!