Just trying to cure my daughter's rare genetic disease, Epidermolysis Bullosa, as the Executive Director of debra of America.
Longmont, CO
Joined May 2013
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Brett Kopelan retweeted
Congratulations to @debraOfAmerica on a successful event last weekend to conclude #EBAwarenessWeek. What a special way to celebrate and honor the #EB Community.
#EBAwareness #LivingwithDEB #raredisease
Brett Kopelan retweeted
ICYMI: @BrettKope spoke about advanced therapies on the horizion including @AbeonaBio’s EB-101 and @CastleCreekBio’s dabocemagene autoficel.
#EBAwarenessWeek2023 #EBAwarenessWeek #genetherapy #celltherapy
Watch now:
cgtlive.com/view/brett-kopel…
More than 1 therapy is needed to holistically test those with deb.
@BrettKope spoke about advanced therapies on the horizion including @AbeonaBio’s EB-101 and @CastleCreekBio’s dabocemagene autoficel.
#EBAwarenessWeek2023 #EBAwarenessWeek #genetherapy #celltherapy
Watch now:
cgtlive.com/view/brett-kopel…
Brett Kopelan retweeted
It’s #EBAwarenessWeek - spread awareness about EB a rare skin disease that causes extremely fragile skin that blisters and tears with any friction.
Learn more and show support of #EBAwarenessWeek from Oct 25-31: krys.bio/gs7
Brett Kopelan retweeted
@BrettKope noted that the approval of @KrystalBiotech's B-VEC #genetherapy represents a major milestone for the #EpidermolysisBullosa treatment landscape.
#EBAwarenessWeek2023 #EBAwarenessWeek
Watch:
cgtlive.com/view/brett-kopel…
This is an incredibly important piece of news 4 investors of cell & gene therapeutics. CGTx, particularly in rare disease, have a much greater chance of approval than other drugs. Durable treatments & curative therapies are getting approved at much higher rates.
New analysis from @TuftsMedicalCtr NEWDIGS shared last week at #CGMesa23 shows that cell and gene therapies are substantially outperforming other, less targeted treatments in the clinic.
@FierceBiotech covers what the new data means for the sector.
fiercebiotech.com/biotech/so…
This is a very important milestone for the EB community.
debra of America Launches Registry for Individuals and Families Diagnosed with "The Worst Disease You've Never Hea... prn.to/3F0ZLP8
Rafi, aka Lily, is in People Magazine. Thx @people for writing about her.
people.com/tiktok-epidermoly…
Brett Kopelan retweeted
@debraOfAmerica is hosting another great EB Community Regional Meetup for individuals with EB and their families. Each event is an educational and social gathering to stay informed and connect with others in the EB community.
To learn more, please visit: krys.bio/4qy
Today, in partnership with The Assistance Fund, debra launched a patient assistance program to defray the costs of out-of-pocket medica expenses associated with eb. Expenses like co-pays, and insurance premiums are eligible for help...
tafcares.org/newsroom/press-…
Can we get Rafi’s video 250,000 views and 2,000 comments? She’s getting up there already, 80,000 views more than 600 comments since this morning. tiktok.com/t/ZT8jry72t/
Brett Kopelan retweeted
Thank you @CBSNews for highlighting the exciting FDA approval of VYJUVEK @KrystalBiotech & its impact on quality of life for individuals with DEB like 15 y/o Rafi, daughter to debra’s Executive Director Brett Kopelan. Watch below. #genetherapy
cbsnews.com/colorado/news/fd…
Here is Rafi and ne on CBS this evening talking about @KrystalBiotech newly approved gene therapy for EB.
cbsnews.com/colorado/news/fd…
Amazing new today. Krystal Bio's topically applied gene therapy was approved by the FDA! This is the first drug approved to treat EB and it has proven to be safe and effective. It's going to change Rafi's life.
ir.krystalbio.com/news-relea…
Brett Kopelan retweeted
I was honored this week to host the #RDDS keynote panel with these amazing advocates @LeahEDSCN2A @BrettKope & Simon Frost. each shared their stories & lessons learned as they chart the path to urgently needed therapies for their children's #RareDiseases. #nextgenerationadvocates
“Using the right tools to measure the right things is critical for drug trials”
-Leah Schust Myers, Plenary Session: Charting the Path to Treatments
@FamilieSCN2A
#RDDS #DrugDevelopment #CareAboutRare
Brett Kopelan retweeted
In honor of #RareDiseaseDay, we’re highlighting THREE pieces of legislation that we’ve been working on that will directly impact those living with #EpidermolysisBullosa. 🦋✊ Support our work at debra.org/donate
#RareDiseaseDay2023
Thanks to all who reached out during this difficult time. My father, Rik Kopelan, passed away this morning a little after midnight. My brothers and I were by his side when he left this earth.