Staff Profiles

  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 This email address is being protected from spambots. You need JavaScript enabled to view it. 

   Diana Pangonis

Diana Pangonis 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 This email address is being protected from spambots. You need JavaScript enabled to view it.

Valerie Greger, PhD

In September 2021 Valerie Greger, Ph.D. 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 This email address is being protected from spambots. You need JavaScript enabled to view it. 

    Susan Keliher

Susan Keliher is the Director of Development and Communications and joined NTSAD in April 2020. Susan brings more than 25 years of fundraising experience and marketing expertise to NTSAD. Working closely with the CEO, Susan raises more than $2 million in revenue each year. She also oversees NTSAD’s annual fundraising events, marketing, and outreach efforts. For the past two decades, Susan has raised significant funds and awareness in support of vulnerable families and youth. To reach Susan, email her at This email address is being protected from spambots. You need JavaScript enabled to view it.

     Becky Benson

Becky Benson is NTSAD's Family Services 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. In addition, Becky helps families raise awareness and funds via NTSAD’s Day of Hope 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 This email address is being protected from spambots. You need JavaScript enabled to view it. 

    Sydnie Dimond

Sydnie Dimond is Development and Communications Associate, where she manages donor recognition and coordinates NTSAD’s marketing efforts including social media, Community News, and the website. She also supports the planning of annual fundraising events, Imagine & Believe and Day of Hope. Sydnie, who joined NTSAD in July 2020, has a passion for patient advocacy, and she brings fundraising and administrative experience from several nonprofits, including the March of Dimes. To reach Sydnie, email her at This email address is being protected from spambots. You need JavaScript enabled to view it.