The Myotonic Dystrophy Foundation is currently looking for a:
- Program Director
- Myotonic Dystrophy Family Registry Coordinator.
- Adminstrative Operations Manager.
- Salesforce Developer or Agency.
Special Projects Manager
Kate joined MDF as Special Projects Manager in April 2021. After serving as a MDF Gala Coordinator in a contract position during 2019 and 2020, she was struck by MDF’s strong community and opportunity for impact, and was moved to join the MDF team with the hopes of advancing our mission of Community, Care and a Cure. Kate will continue to coordinate the Annual Fundraising Gala, and will manage other special satellite projects such as the DM Research Map currently in development. Prior to joining the foundation, Kate lived and worked in Tokyo, Japan, as a JET English teacher and cultural ambassador and then in the music and entertainment industry. She is an LA native and earned her Bachelor’s degree in Religious Studies and Music at the University of California, Santa Barbara.
Kevin Brennan, Principal of BlueBird Strategies, has served as the Myotonic Dystrophy Foundation’s advocacy consultant since 2015. Working with the community, he has helped MDF increase federal funding for myotonic dystrophy research by $8.1 million over the past 5 years through congressional designation of myotonic dystrophy as an eligible condition under the Department of Defense Peer Review Medical Research Program (PRMRP). In 2017, MDF successfully advocated for Congenital DM to be included in the Social Security Compassionate Allowance program which helps individuals more quickly qualify for disability benefits including health insurance coverage. Kevin has also organized MDF U.S. Senate research briefings and testimony before the U.S. House Appropriations committee on NIH funding.
In 2022, in response to MDF advocacy, Congress included a provision in the fiscal year 2023 appropriations bill establishing the Repeat Expansion Disease Initiative (REDI) at the NIH which will increase DM research opportunities and we helped pass the first ever U.S. Senate resolution recognizing September 15th as International Myotonic Dystrophy Awareness Day. Prior to his work with MDF, Kevin held senior positions in Congress for members of the US House Appropriations and Energy & Commerce committees, led the Arthritis Foundation’s public policy and advocacy office, and worked in the global government affairs office at Amgen. His lives in Washington, D.C. with his wife and three children.
Communications & Technology Manager
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. 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.
Allison Formal, MBA
Senior Science Advisor
Allison is a executive business development consultant working with non-profits and industry to impact patients' lives. Clients and projects have included: working with Dr. Bruce Beutler and his start-up company Tollbridge to launch opportunities developing immunotherapies aimed at TLR 1/2; acting as an Entrepreneur-in-Residence at UCLA supporting academic researchers in clinical translation; advising numerous disease-focused non-profit funders on programs related to therapeutic development and initiatives around targeting disease progression biomarkers; and working with biotech companies developing novel oncolytic virus programs.
Allison was formerly VP, Research Business Development at The Leukemia & Lymphoma Society (LLS) where she helped build a successful venture philanthropy initiative, the Therapy Acceleration Program (TAP), creating more than 60 research and development partnerships investing in biopharmaceutical companies and academic researchers developing therapies and diagnostics targeting blood cancers. Allison’s career also includes service on the Translational Medicine and Commercialization Oversight Committee of the University of Michigan Medical School, membership on the Bio-therapeutic Grant Review Committee between Oregon Health & Sciences University and the Oregon Clinical & Translational Research Institute and VP of Business and related roles at MediQuest, Neuralstem, and Watson Pharmaceuticals (now Allergan). Allison started her career at Pfizer and earned her MBA in finance and marketing from Marymount University.
Mounica Lakshmi Dugginapeddi, MPH
Community Programs Coordinator
Mounica Lakshmi Dugginapeddi joined MDF in June 2022 as Community Programs Coordinator shortly after receiving her Master of Public Health degree from the UCLA Fielding School of Public Health. The impact made by MDF in advocating for patients and families navigating through myotonic dystrophy throughout the world motivated her to join MDF. Previously, she graduated from medical school in Hyderabad, India where she worked as a medical intern for a year in various medical departments while also volunteering at a local community clinic as a health educator. After moving to the US, she volunteered as a community health mentor for the “Check, Change, Control” Program of the American Heart Association in the Bay Area and as a Donor Ambassador at San Jose American Red Cross Blood Donation Center. Her passion for community health education and patient advocacy have been the key driving forces for her journey in public health, and she looks forward to contributing her skills for the great work being done by MDF in this new role.
Operations & Data Specialist
Andrew joined MDF in 2019 as an Operations and Data Specialist to assist with donation processing, manage day-to-day administrative tasks, and assist with mailing campaigns. Andrew’s love for helping people, awe of our community’s strong bonds, and excitement to join a small team working to make a difference made him an excellent fit for MDF. As a critical part of our development team, Andrew has processed thousands of donations and particularly enjoys the attention to detail required for his work. Andrew earned his Bachelor of Science in Business Marketing from California State University, Chico.
Ruth Sheldon, MPH, MSW
Health Resource Consultant
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.
Nadine Skinner, PhD, MPA
Dr. Skinner has over a decade of experience in grants management, fundraising, and evaluation at a range of community-based organizations, government agencies, and international organizations. She recently completed her PhD in International Comparative Education at Stanford and teaches courses on globalization, international development, human rights, and education at San José State and Stanford. She earned an MPA from Cornell University in Social Policy and a BA from UC Santa Cruz in Politics & History.
Tanya Stevenson, EdD, MPH
Chief Executive Officer
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!
2022 Summer Interns
Public Health Intern
Annalise joined the MDF team in the summer of 2022 as a Public Health Intern after finishing her first year as an undergraduate at UC Davis, where she intends on majoring in Anthropology with a minor in Public Health. At university, Annalise volunteers for a student-run clinic and is an active member of the public health sciences club. Previously, she interned for local initiatives focused on community nutrition and food choices, as well as plant-based advocacy that meets people where they are. Annalise is extremely excited to learn more about the DM community and begin her work to make DM resources and care information more accessible.
Niv is a senior at the University of Washington in Seattle, where she is pursuing her Bachelor of Arts in Communication with a minor in Acting. It was through her university that she first learned about MDF and the opportunity to support and empower the DM community while putting her writing skills to good use this summer. As a part of the Communications team, Niv hopes to have conversations with as many members of the community as possible to help share their stories. She also hopes to advocate for more outreach and resources for the international DM community during her time here. Niv is thrilled to be contributing to projects that are changing the future of this rare disease in a scientific, research-based, and caring way.
Nonprofit Public Health Program Intern
Emily joined MDF in June of 2022 as an intern to assist with the MDF Toolkit update project. She is currently a graduate student at Brigham Young University and will graduate in the fall with her Master of Public Administration degree with an emphasis in nonprofits with a social impact minor. With her undergraduate degree in public health, Emily is passionate about the intersection of the public health and nonprofit sectors. She is excited to be a part of the MDF team as they work to support the DM community through their mission of community, care, and a cure.
Public Health Research Intern
Pari is currently an undergraduate at UC San Diego working towards her Bachelor of Science in Public Health with a concentration in Biostatistics. In college, Pari holds a Research Assistant position at the UCSD School of Engineering in partnership with its School of Medicine, where she is working to create a 3D Printed Blood Pressure Clip that can turn Smart Phones into Blood Pressure Monitors. She is also an active member of the UCSD StRIVE club, where she volunteers to teach independent living skills to her peers with special needs. For her MDF internship, Pari is aiding in the creation of the DM Research Map, which will provide the DM community members and researchers a convenient and innovative way to access and explore myotonic dystrophy focused research.