Firefly Fund Announces $5 Million Gift

FOR IMMEDIATE RELEASE February 27, 2024 Firefly Fund Announces $5 Million Gift to Create Center for Rare Disease at UT Austin Dell Medical School Austin, Texas – To mark World…Read More

Read More
Texas Infant to Become Fifth Child to Receive Life-Saving Gene Therapy Treatment on U.S. Soil

DALLAS, Feb. 05, 2024 (GLOBE NEWSWIRE) — Sufyan Pashai, a 4-month-old from Dallas, will travel to Minnesota and become the fifth child to receive life-saving gene therapy treatment on U.S….Read More

Read More
Firefly Fund Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth

FOR IMMEDIATE RELEASE: May 10, 2021 CONTACT:  Pam Andrews pam@fireflyfund.org Austin Nonprofit Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth  Pilot Study enrolls…Read More

Read More
Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News

A continuation of Firefly Fund co-founder Pam Andrews’ discussion with NPC moms, highlighting the benefits of Adrabetadex. The moms share their fears about a future without the medication, the popular…Read More

Read More
Firefly Chat Episode 7 (Part 1): NPC Moms React to Adrabetadex News

Firefly Fund co-founder Pam Andrews has a heartfelt and candid conversation with nine other NPC moms from around the world regarding recent news of the discontinuation of the medication Adrabetadex. This episode gives a glimpse into…Read More

Read More
Buy a Cat Lawyer T-shirt today & Join the Flight!

Rod Ponton, AKA the Cat Lawyer, has become an internet sensation, bringing much-needed laughter to people around the world. Mr. Ponton hopes to use the opportunity as a springboard to…Read More

Read More
The Wall Street Journal Features Andrews’ NPC Journey

Amy Marcus of the The Wall Street Journal featured the Andrews’ journey with Niemann-Pick Type C (NPC) and the investigational medication referred to as Adrabetadex (VTS-270). The article also highlighted…Read More

Read More
Austin American-Statesman Features Firefly Fund’s Work in Newborn Screening

The Austin American-Statesman featured Firefly Fund’s work on newborn screening for NPC. The online article highlighted the ScreenPlus program, that with Firefly Fund’s support, recently launched at Children’s Hospital at…Read More

Read More
Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals

Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare…Read More

Read More
Firefly Chat Episode 5: NNPDF

Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board…Read More

Read More

More Results »