Meet the I AM ALS team

Aditi Narayan Minkoff (She/Her)

Director of Community Support

As director of community support at I AM ALS, Aditi developed a person-centered community support program and tools that will empower those living with ALS, caregivers, and their families with relevant medical and research information, support them emotionally, connect them with practical resources, and help them build a community around them. Prior to joining I AM ALS, Aditi served as the director of programs & strategy at LIVESTRONG, where she managed a suite of national supportive care programs benefiting cancer patients, survivors, and caregivers. Aditi’s international experience living in India and Singapore has shaped her drive to address social injustice across the globe, starting with the human right to quality health care. Aditi earned a Master of Science in Social Work from The University of Texas at Austin and a B.A. in Communication from George Mason University.

Allie Sebesta (She/Her)

ALS Support Specialist

As an ALS support specialist at I AM ALS, Allie provides invaluable resources to people impacted by ALS. Allie is passionate about helping people navigate chronic and serious health conditions and building a community of support for people affected by ALS. Allie earned her B.A. in Social work from The University of Southern Mississippi and her Masters in Science in Social Work from The University of Texas. Prior to joining I AM ALS, Allie spent a decade as a patient navigator with The American Cancer Society. Previously, she worked as a program coordinator for The Department of the State of Texas Health Service’s Crisis Counseling Program and also as a case manager with Texas Interfaith Disaster Response.

Blake Johnson (She/Her)

Community Support Outreach and Inclusion Lead

As community support outreach and inclusion lead at I AM ALS, Blake helps expand the reach of community support programs and initiatives, specifically to under-resourced populations, increasing equitable access to and utilization of care and resources for those impacted by ALS. Prior to I AM ALS, Blake worked for the Atlanta Hawks in community programming and partnerships, as well as grassroots marketing. Specifically, she helped break down barriers of access to play for youth across all physical and socioeconomic backgrounds through their Inclusive Programs such as scholarship initiatives, adaptive sports, and female-focused programming. Blake is a committed community member, volunteering as a paralegal, youth mentor, and poll manager in the 2020 election cycle. She has a sports management degree from Syracuse University where she also played on the women’s soccer team.

Deb Paust (She/Her)

Community Organizing Associate

As a Community Organizing Associate, Deb provides valuable support and empowerment to the I AM ALS community teams as they develop impactful advocacy initiatives. Deb is passionate about connecting with people affected by ALS on a personal level to educate, engage and assist in achieving advocacy goals.

Prior to joining I AM ALS, Deb worked in Physical Therapy for more than 30 years before taking leave to be a full time caregiver to her husband Tim who had ALS. Deb has been an ALS advocate for more than 10 years, including serving as co-chair of the I AM ALS Legislative Affairs Team. Deb earned her Associates in Applied Science at Oakton Community College.

Emily Johnson (She/Her)

Communications and Operations Associate

As Communications and Operations Associate at I AM ALS, Emily supports the team across various efforts to build and mobilize a digital community of ALS advocates and ensure the sustainability of the growing organization throughout its day-to-day operations. Before making the jump to the nonprofit world with I AM ALS, Emily worked in publishing as a publicist, where she generated buzz about books and authors and helped them shine. Before that, she earned her Bachelor’s degree in English and Linguistics from the University of Maryland.

Holly Curtis (She/Her)

Community Organizing Associate

As a Community Organizing Associate, Holly provides support to I AM ALS’s advocates as they design and implement various advocacy strategies. Holly is passionate about building communities where everyone feels looked out for and cared about. She is also passionate about emotional health and intelligence and bringing these aspects into community organizing. Holly received her Master’s Degree in Social Work from George Mason University and previously worked as a counselor at an eating disorder treatment facility.

Hope Feuling (She/Her)

ALS Support Specialist

As an ALS support specialist at I AM ALS, Hope provides support to people impacted by ALS. Hope is passionate about providing person-centered support, assisting with resource finding and engaging in patient advocacy efforts. Hope obtained a BA in Social Work with a minor in Psychology from the University of North Texas. She took a special interest in working within community navigation after personal experiences traversing the healthcare system as a patient and family advocate. Hope previously worked at the Gladney Center for Adoption as a residential care coordinator in the foster care group-home.

McKenzie Mok (She/Her)

Lead ALS Support Specialist

As lead ALS support specialist at I AM ALS, McKenzie provides community-based support services to those living with ALS, caregivers, and loved ones affected by ALS. McKenzie is passionate about providing support to anyone impacted by ALS, assists with resource finding, and engages in patient advocacy efforts. McKenzie obtained an MA in Speech-Language Pathology from the University of Kansas, as well as a BA in Communication Sciences and Disorders from the University of Iowa. McKenzie has a particular interest in Augmentative and Alternative Communication (AAC) and assistive technology. Prior to joining I AM ALS, McKenzie worked as a solutions consultant for Tobii Dynavox, a communication device manufacturer.

Michael Lecker, Ph.D. (He/Him)

Director of Organizing

As Director of Organizing at I AM ALS, Michael creates and manages programs and committees that engage, educate, recruit and empower those affected by an ALS diagnosis to serve as a team of advocates who can organize, empower and activate their respective communities. Prior to I AM ALS, Michael was the director of LGBTQ health and inclusiveness at Trillium Health in Rochester, NY. At Trillium Health, he developed, implemented and managed programs that educated, empowered and recruited marginalized populations into primary and sexual health care programs.

Michael has a Ph.D. in Cultural Studies from George Mason University and has taught courses on HIV, gender, sexuality, race, media and community at Rutgers University, George Mason University, Hampden-Sydney College, and Bowling Green State University.

Sonya Sotak Elling (She/Her)

Chief Government Affairs Officer

As the Chief Government Affairs officer at I AM ALS, Sonya is responsible for leading the Federal legislative and advocacy strategies designed to impact the community priorities and amplify all the amazing and passionate work being done by the ALS community.

Sonya began her career in public affairs on Capitol Hill, where she spent over a decade in the United States Senate.  After leaving the U.S. Senate, she spent almost twenty years in the biopharmaceutical industry, including seventeen years with Eli Lilly and Company, where she was a Senior Director of Government Affairs. Most recently, Sonya held a senior role in government affairs at bluebird bio, a small but innovative biotech company.

Sonya obtained a BA in English and Japanese from the University of Arizona.

Tadzie Madzima (She/Her)

Associate Director of Marketing and Communications

As Associate Director of Marketing and Communications at I AM ALS, Tadzie coordinates and oversees all internal and external communications initiatives and marketing campaigns in support of I AM ALS’s overall objectives, including those of the eight community teams composed of volunteers.

She has more than fifteen years of experience in strategic communications and the implementation of high-impact media campaigns across digital and non-digital channels and has held a range of marketing leadership positions. She has international expertise establishing efficient marketing campaigns and communication strategies in Africa, Europe, and the United States. Tadzie is an advocate for diversity, equity, and inclusion, who is adept at storytelling, as well as producing a variety of strategic communications tools and combining them with a deliberate marketing approach to reach and persuade important audiences into action.