Ginger Gonsalves

Mom, wife, sister, friend, EPP (porphyria) survivor/advocate and a forever DMB fan.

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine @US_FDA
Yesterday marked 3 years since I started taking Bitopertin to treat my Erythropoietic Protoporphyria-EPP. I celebrated by spending the weekend in the garden.The past three years have been absolutely life changing.
#FDAapprovebitopertin
#bitopertinsetmefree

[Ginger Gonsalves @GingerGonsalves]

I am the patient in this interview. As a Bitopertin Phase 2 trial participant in the extension, I want to thank @DiscMedicine for 2 yrs 10 mo and counting of ZERO EPP reactions! Bitopertin set me free. @US_FDA approve Bitopertin! It’s changed my whole world
#fdaapprovebitopertin

[Disc Medicine @DiscMedicine]

In EPP, phototoxic reactions aren't just immediate, they can be severe and prolonged. The impact goes beyond the skin, affecting sleep, focus, and daily functioning. Learn more from Ginger, who shares her experience living with these reactions as #GlobalPorphyriaDay approaches.

[Ginger Gonsalves @GingerGonsalves]

@DrMakaryFDA @DiscMedicine
@UnitedPorphAssc @US_FDA
Our community may be rare but we stronger and louder than you think!

#approvebitopertin
#fdaapprovebitopertin
#bitopertinsetmefree

https://t.co/840IcQGbm8

[Ginger Gonsalves @GingerGonsalves]

@DrMakaryFDA @US_FDA Two local women share life with rare sun condition, urge continued drug development.
#approvebitopertin
#bitopertinsetmefree

https://t.co/0GByoPNwNd

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine Thank you for standing with our EPP community in our fight against the sun.

[Ginger Gonsalves @GingerGonsalves]

@DrMakaryFDA @DiscMedicine @DrMakaryFDA @UnitedPorphAssc Please Approve Bitopertin!
As a phase 2 trial participant currently in the extension this drug has changed my whole world. I went from severe pain within 7-10 minutes of sun exposure to over 9 hours PAIN FREE!#approvebitopertin

[Ginger Gonsalves @GingerGonsalves]

@DrMakaryFDA
Help us help our EPP/XLP community.
Please come back to the table.
@DiscMedicine
@UnitedPorphAssc
#approvebitopertin

[Ginger Gonsalves @GingerGonsalves]

#NewProfilePic

[Ginger Gonsalves @GingerGonsalves]

So grateful to be on Bitopertin
@DiscMedicine thank you!

[The Boston Globe @BostonGlobe]

A new drug has allowed two women to go in the sun for the first time. They’re terrified they may have to give it up. https://t.co/4kyg86VToo

[Ginger Gonsalves @GingerGonsalves]

Thank you!

[Disc Medicine @DiscMedicine]

We are excited to announce we have received a Commissioner’s National Priority Voucher (CNPV) from the U.S. Food and Drug Administration for #Bitopertin in #ErythropoieticProtoporphyria (#EPP), including #XLinkedProtoporphyria (#XLP). Read more: https://t.co/8mhzH06H0j

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine This is going to change the lives of our entire community. I’m not crying, you’re crying.

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine
Thank you! I had the best day apple picking with my family.

[Ginger Gonsalves @GingerGonsalves]

Thank you @DiscMedicine
Bitopertin has changed my whole world.

[Disc Medicine @DiscMedicine]

We are excited to announce submission a New Drug Application to the U.S. FDA for #Bitopertin in #ErythropoieticProtoporphyria (#EPP) and #XLinkedProtoporphyria (#XLP) under the accelerated approval pathway. Read the full announcement here: https://t.co/ynCvTlLA8n

[Ginger Gonsalves @GingerGonsalves]

@porphyria_news 💜

[Disc Medicine @DiscMedicine]

#EPP & #XLP are more than light sensitivity — #PPIX buildup can also affect liver & bone health, as well as quality of life.

Our new sites offer dedicated resources for HCPs and people living with EPP. Start exploring at https://t.co/KmCsJHPeQx and https://t.co/FiRWbkvBuM

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine so grateful for Dr. Dickey and Dr. Karp! Having doctors that truly understand my porphyria is priceless. The Bitopertin trial has changed my whole world! I have had zero EPP reactions in 23 months and counting. Bitopertin set me free. #porphyria community.💜

[Disc Medicine @DiscMedicine]

Grateful to Drs. Amy Dickey and Rebecca Karp for joining our team for a special Lunch & Learn in honor of #GlobalPorphyriaDay, which is May 18. They shared valuable insights that deepen our understanding of #EPP, #XLP, and the broader challenges facing the #Porphyria community.

[Ginger Gonsalves @GingerGonsalves]

@MTPA_US @UnitedPorphAssc @ShadowJumpers_ Thank you!!! This is my second year as a volunteer and it was such a meaningful experience. I am counting down the days till next year.

[Victory Junction @VictoryJunction]

This weekend was All Fun, No Sun! 😎🌙

We partnered with @ShadowJumpers_ & @UnitedPorphAssc to welcome campers with photosensitive conditions - adapting Camp so they could experience the joy of VJ!

From night fishing to bowling & archery, the campers truly shined! 🤩🎣🎳

[Ginger Gonsalves @GingerGonsalves]

👏🏻👏🏻👏🏻

[United Porphyrias Association @UnitedPorphAssc]

We're so thrilled to work with so many amazing patients and organizations in the rare disease community!
#RareAsOne #RareDiseaseDay

[Ginger Gonsalves @GingerGonsalves]

@DiscMedicine
Thank you for setting me free!
#bitopertin

[Disc Medicine @DiscMedicine]

We're excited to announce positive feedback from our end-of-Phase 2 meeting with the FDA, supporting the development path forward for bitopertin in #EPP and highlighting the potential for accelerated approval. Join us for our webcast at 8am ET: https://t.co/qiARsEHt3x