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)
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
Documentary:
Tori’s Triumph (2018)
Forge Biologics – Community Stories (2023) (YouTube Link)
Author: Even So, Joy: Our Journey Through Heartbreak, Hope, & Triumph
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)
Podcast 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)
Krabbe and Newborn Screening
Speaking Engagements
HB1081 Testimony Transcript and Video (2017)
Cure MLD Standards of Care (March 2021)
ULF Conference (June 2021)
Orchard Therapeutics (Sept. 2021)
PerkinElmer (Nov. 2021)
Brain & Tissue Banking Webinar (Jan. 2022)
Life Sciences PA (February 2022)
Forge Biologics (March 2022)
Krabbe Translational Research Network (March 2022)
GLIA Patient Advocacy Group Discussion – NBS Family Support (April 2022)
LDNBS Video Series – Moderator & Contributor – (2021-2022)
Expecting Health Video Series (2022)
Expecting Health Newborn Screening Ambassador Webinar (Sept. 2022)
Pennsylvania Rare Disease Advisory Council Stakeholder Summit (Sept. 2022)
GLIA 2022 Scientific Meeting – Krabbe Disease Advocacy Speaker (Oct. 2022)
#CureKrabbe Family Meeting (April 2023)
Public Comments before the ACHDNC (May 4, 2023)
Newborn Screening education and updates, ULF Conference (June 2023)
Cure GM-1 Conference – “From Parent to Parent Advocate” (September 2023)
EveryLife Foundation Newborn Screening Bootcamp – Panelist (November 2023)
Legislative Accomplishments
Act 133 of 2020 (Pennsylvania)
Act 29 of 2022 (Pennsylvania)
Journal Articles:
Pediatrics (July 2022): Making Decisions About Krabbe Newborn Screening
One pending publication (co-author)
Even So, Joy 