Media Appearances
- TIME (2004)
- People, Motherly, Daily Mail, ESPN, TheBurg (2018)
- The Mighty (Contributed three articles)
- TheBurg (2022)
- RARE Revolution Magazine (2023)
- InvestigateTV (2023)
- ENJOY Magazine (2023)
- TIME Magazine (2025)
- RARE Revolution Magazine (2026)
Local Newspapers and Television (2015-2018):
- Victoria’s Obituary
- “You Never Expect To Hear…” – PennLive
- Family Completing Bucket List – CBS21 (Harrisburg)
- Mom Fighting for Law – CBS21 (Harrisburg)
- Joy Through Tragedy – Lewistown Sentinel
- Push to Implement PA Law – Fox43 News
- Baby with Rare Disease Dies on Easter – Evening Sun
- We knew we only had her for a short time – PennLive
- Parents Fight for Legislation – CBS21 (Harrisburg)
- Following Death of Daughter, Mom Pushes for Early Testing – Lancaster Online
- PA Rare Disease Council Applauds Enactment of Legislation
- Senate Approves DiSanto Bill to Better Protect Newborns
Author:
Even So, Joy: Our Journey Through Heartbreak, Hope, & Triumph (2018)
A Brighter Blueprint: The Twelve Threads of Effective Advocacy (March 27, 2026)
Book Contributor: “The Art of Screen Time: How Your Family Can Balance Digital Media & Real Life” by Anya Kamenetz (pg. 167, 169-171, 172-173)
Guest Posts:
PKUJournal.com – Why Newborn Screening Advocacy Matters
Patient Advocacy Strategies Blog (multiple posts)
Institute for Gene Therapies – Faces of Gene Therapy
Documentaries
- Tori’s Triumph (2018)
- Forge Biologics – Community Stories (2023) (YouTube Link)
Podcast and Radio Appearances
- Truth, Salt, and Spice (2018)
- The Autumn Miles Show (2018)
- At the Rectory (2021 – two appearances)
- Dauntless Grace Exchange (2022)
- TheBurg (2022)
- Hunter’s Hope (2023)
- Breaking the Silence (April 2024)
- WITF – The Spark (July 15, 2024)
- LSPA – Being a Life Sciences Leader (Nov. 2024)
Speaking Engagements
- 2017:
- 2021:
- Cure MLD Standards of Care
- ULF Conference
- Orchard Therapeutics
- PerkinElmer
- LDNBS Video Series – Moderator & Contributor – (2021-2022)
- 2022:
- Brain & Tissue Banking Webinar
- Life Sciences PA
- Forge Biologics
- Krabbe Translational Research Network
- GLIA Patient Advocacy Group Discussion – NBS Family Support
- Expecting Health Video Series
- Expecting Health Newborn Screening Ambassador Webinar
- Pennsylvania Rare Disease Advisory Council Stakeholder Summit
- GLIA 2022 Scientific Meeting – Krabbe Disease Advocacy Speaker
- 2023:
- #CureKrabbe Family Meeting – NBS Updates
- Public Comments before the ACHDNC
- Newborn Screening education and updates, ULF Conference
- Cure GM-1 Conference – “From Parent to Parent Advocate”
- EveryLife Foundation Newborn Screening Bootcamp – Panelist
- 2024:
- Krabbe Translational Research Network Meeting
- MLD U.S. NBS Alliance Meeting
- State-by-State Plan for Introducing and Implementing Screening for MLD – ULF Conference
- Newborn Screening Crash Course – ULF Conference
- Collaboration is Everything – United MSD Foundation Conference
- CDC Video Series
- Speaker, RDLA Advocacy Day, Harrisburg, PA
- Panelist, Life Sciences PA Patient Summit, Philadelphia, PA
- 2025:
- World Orphan Drug Congress (April 2025)
- EveryLife Foundation for Rare Diseases: Congressional Briefing (May 2025)
- Genetic Alliance: Reflections on the NASEM Report from the Rare Disease Community (July 2025)
- Lebanon Valley College White Coat Ceremony – Speech Language Pathology Students (August 2025)
- RDLA State Advocacy Webinar (September 2025)
- MassBio Patient Advocacy Summit (November 2025)
- 2026
- Forward Party Women’s Committee (April 2026)
Legislative Accomplishments
- Act 133 of 2020 (Pennsylvania)
- Act 29 of 2022 (Pennsylvania)
Journal Articles:
- Pediatrics (July 2022): Making Decisions About Krabbe Newborn Screening
- Journal of Managed Care & Specialty Pharmacy (July 2024): Impact of mental health in persons living with rare disease: Findings from the AMCP Market Insights Program
- Analyzing accessibility and suitability of online Krabbe disease resources (Nov. 2025) (thesis advisor for genetic counseling student)
Educational Content and Strategic Plans
- Strategic Plan for Expanding NBS for Krabbe disease
- Strategic Plan for Expanding NBS for MLD
- Effective Advocacy
Even So, Joy 