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!

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. 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!

Dr. Nadine Ann Skinner, joined MDF in January 2020, bringing nearly 20 years of experience in program and grants management, fundraising, and research and program evaluation at a range of community-based organizations, government agencies, philanthropic foundations, and international organizations. A global health and higher education researcher, she contributes to the Stanford Center for Health Education’s Digital Medic initiative and Stanford’s Global Civil Society and Sustainable Development Lab. Nadine also teaches courses on research, evaluation, globalization, international development, human rights, and education at Cornell, San José State, and Stanford. She holds a PhD in International Comparative Education from Stanford, a MPA from Cornell with a focus on Social Policy, and a BA in Politics and History from the University of California, Santa Cruz.

In fall of 2022, Ruth Sheldon joined our team as our Health Resource Consultant! Ruth lives with myotonic dystrophy and is eager to apply her academic and professional knowledge to a cause she is passionate about. Ruth has a background in community health programming, public health policy, and clinical social work; she obtained her MPH and MSW from the University of Minnesota in 2021. Currently, Ruth lives in Saint Paul where she spends weekends visiting apple orchards and writing poetry.

Dr. Sofia Olmos joined MDF in January 2023 as the Myotonic Dystrophy Family Registry Coordinator. Sofia is passionate about patient advocacy, research and education and brings with her over fifteen years of experience in academia and the nonprofit sector. After completing her Ph.D. in Immunology back in Argentina, she moved to the U.S. to further her scientific training as a postdoctoral fellow working at Albany Medical College, Albany, NY, and New York University, New York, NY respectively. Always interested in having a more direct involvement in patient care communities and translating medical knowledge and research findings into population health improvement, Sofia switched out the laboratory for the nonprofit world. Her experience as a patient advocate at the Leukemia and Lymphoma Society (LLS) reinforced her interest in pursuing a career in a community-based organization and being part of a team with the common goal of helping people.

Kleed joined MDF in 2018 as Program Associate to assist the Program and Development Directors with Patient Support and Education as well as various aspects of program research and content development, communications and fundraising. MDF's holistic approach to the issue of an uncured disease attracted Kleed to MDF, due to his desire to find meaningful work at an ethical and fast moving organization. In 2020 he became MDF's Communications & Technology Manager and then the Director of Communications & Technology in 2023. Prior to joining MDF, Kleed interned at the Investment Center of the United Nations Federal Credit Union in New York City. He earned his Bachelor of Science in Business and Technology Management from New York University.

Mindy joined MDF in January 2023. As the Director of Programs, she leads MDF’s Community & Care initiatives. She is passionate about ensuring everyone affected by chronic and rare diseases have access to education, resources, and most importantly, community. Mindy brings 17 years of experience providing strategic program development, management, and leadership across uniquely challenging settings. Her background includes working in both academic medical center and non-profit settings, she brings an in-depth understanding of how research and data informs and elevates supportive and advocacy programming.

Mindy spent nearly a decade working in the rare cancer space with adolescents and young adults (AYA). Most recently, as the Director of Patient Programs, she led peer-to-peer support, educational, and psychosocial programming for people affected by sarcoidosis at the Foundation for Sarcoidosis Research. Mindy completed her BA from Portland State University in Community Health Education, and a post-graduate-certificate in biomedical ethics. Mindy is also a certified storytelling coach through Living Proof Advocacy. She lives between Portland, Oregon and Edinburgh, Scotland, where she can always be found with her nose in a book.