National Tay-Sachs & Allied Diseases Association
Leadership
NTSAD Staff Profiles
Diana Jussila (formerly Pangonis)
Director of Family Services
Diana Jussila is NTSAD’s Director of Family Services where she directs the Family Services Programs and supports families receiving a diagnosis, caring for themselves and their loved ones, and navigating clinical trials and grief.
In 2020, Diana expanded her role to include patient advocacy, and she works closely with industry partners as they develop treatments and therapies. Throughout her tenure at NTSAD which began in 1995, Diana has worked in Family Services, Development, and Communications, and she served as Interim Executive Director, but her true calling is supporting families.
To reach Diana, email her at diana@ntsad.org.
Kathleen M. Flynn
Chief Executive
Officer
Kathleen M. Flynn
Kathleen M. Flynn joined NTSAD as CEO in November 2021. Kathy brings to NTSAD three decades of leadership and organizational management expertise spanning nonprofit, corporate, and academic environments.
Prior to NTSAD, Kathy has raised significant funds and has led teams across the country. She has built communities, engaged key stakeholders, and developed relationships with healthcare professionals and donors at The American Liver Foundation, The Arthritis Foundation, Yale Law School, and Mercy Learning Center.
Throughout her career, Kathy has collaborated with patients, caregivers, clinicians, and industry members — motivating and uniting them through identifying common goals. Kathy is responsible for the strategic vision of NTSAD, including advancing research, overseeing daily operations, and enhancing the team.
To reach Kathy, email her at kflynn@ntsad.org.
Diana Jussila
(formerly Pangonis)
Director of Family Services
Diana Jussila (formerly Pangonis)
Diana Jussila is NTSAD’s Director of Family Services where she directs the Family Services Programs and supports families receiving a diagnosis, caring for themselves and their loved ones, and navigating clinical trials and grief.
In 2020, Diana expanded her role to include patient advocacy, and she works closely with industry partners as they develop treatments and therapies. Throughout her tenure at NTSAD which began in 1995, Diana has worked in Family Services, Development, and Communications, and she served as Interim Executive Director, but her true calling is supporting families.
To reach Diana, email her at diana@ntsad.org.
Valerie Greger, PhD
Director of Research
Valerie Greger, PhD
In September 2021 Valerie Greger, PhD joined NTSAD as the organization’s first Research Director. She is an accomplished academic, scientist, and leader with extensive experience in human genetics, genomics, molecular biology, and bioinformatics.
In her role, Valerie leads NTSAD’s research grant program and implements initiatives in clinical development, newborn screening, and early diagnosis. She also serves as a resource for communicating scientific and medical information to patients.
Valerie is passionate about creating value from scientific discoveries, transforming ideas into reality, and making an impact on patients’ lives. Valerie is working part-time at NTSAD, as she also works with the Yaya Foundation for 4H Leukodystrophy. Her combined experience at these organizations will enhance research in the rare leukodystrophy community.
To reach Valerie, email her at vgreger@ntsad.org.
Becky Benson
Family Support and Engagement
Manager
Becky Benson
Family Support and Engagement Manager
Becky Benson is NTSAD’s Family Support and Engagement Manager. As a member of the Family Services team since 2014, Becky provides one-on-one support and connection to families from diagnosis to bereavement. She also plans the Annual Family Conference, a four-day event for families, researchers, industry partners, and rare allies.
Additionally, Becky supports NTSAD’s community outreach efforts, assists in the planning of Imagine & Believe and helps families raise awareness and funds via NTSAD’s Day of Hope and Rare Disease Day each year. Becky joined the NTSAD Community as a parent after her daughter, Miss Elliott, was diagnosed with Tay-Sachs in 2009.
To reach Becky, email her at becky@ntsad.org.
Cynthia Perreault-Micale, PhD
Research Manager
Cynthia Perreault-Micale, PhD.
Cyndy is an accomplished scientist with extensive experience in basic molecular biology research, science writing and editing, genetic testing, and data analysis. Through her work at genetic testing companies Sema4/GeneDX and GoodStart Genetics, she was inspired to join the field of rare diseases and advocate for people affected by them. At NTSAD, Cyndy will manage scientific working groups; support an international network of researchers, clinicians, and industry partners; and help drive the goals of the Research Initiative.
To reach Cyndy, email her c.perreault-micale@ntsad.org.
Erin Demers
Development Manager
Erin Demers
Erin brings a strong background in non-profit fundraising, program strategy, and mission-driven communications, with experience spanning workforce development and education. She is passionate about building meaningful relationships, mobilizing resources, and creating lasting impact for the rare community. Erin is committed to compassion, connection, and equity and is excited to be joining us at NTSAD.
Angela Papierski
Development Assistant
