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Rare doesn’t mean few.
It means millions of lives and a race against time.

What starts with one rare disease becomes a story shaped by music, community, and hope. A story of people refusing to wait, moving what once felt impossible closer to reality... a cure, starting with Epidermolysis Bullosa, the Butterfly Disease, where skin can be as fragile as a butterfly’s wings.

Watch Matter of Time, now streaming on Netflix. Link in bio.

For those with severe Epidermolysis Bullosa (EB), time is the most valuable asset, yet every day brings pain and dangerous complications. They can’t wait decades for a cure.

Our Venture Philanthropy model turns your donation into an engine for cures:

→ Invest in breakthrough research.
→Share in the success.
→Reinvest every return, multiplying your impact again and again until EB is cured.

Since our inception, we have seen an increase in clinical trials by more than 25x, and the science we fund could help cure 10,000+ rare diseases, impacting 400M people worldwide.

Time is precious. Let’s give it back. Join us as we venture into cures.

Give through one-time or monthly gifts, stocks, crypto, or your DAF → Link in bio

#VenturePhilanthropy #EBResearch #RareDiseaseResearch

For those with severe Epidermolysis Bullosa (EB), time is the most valuable asset, yet every day brings pain and dangerous complications. They can’t wait decades for a cure.

Our Venture Philanthropy model turns your donation into an engine for cures:

→ Invest in breakthrough research.
→Share in the success.
→Reinvest every return, multiplying your impact again and again until EB is cured.

Since our inception, we have seen an increase in clinical trials by more than 25x, and the science we fund could help cure 10,000+ rare diseases, impacting 400M people worldwide.

Time is precious. Let’s give it back. Join us as we venture into cures.

Give through one-time or monthly gifts, stocks, crypto, or your DAF → Link in bio

#VenturePhilanthropy #EBResearch #RareDiseaseResearch

For those with severe Epidermolysis Bullosa (EB), time is the most valuable asset, yet every day brings pain and dangerous complications. They can’t wait decades for a cure.

Our Venture Philanthropy model turns your donation into an engine for cures:

→ Invest in breakthrough research.
→Share in the success.
→Reinvest every return, multiplying your impact again and again until EB is cured.

Since our inception, we have seen an increase in clinical trials by more than 25x, and the science we fund could help cure 10,000+ rare diseases, impacting 400M people worldwide.

Time is precious. Let’s give it back. Join us as we venture into cures.

Give through one-time or monthly gifts, stocks, crypto, or your DAF → Link in bio

#VenturePhilanthropy #EBResearch #RareDiseaseResearch

Epidermolysis Bullosa (EB) is a group of rare, life-threatening genetic disorders where the proteins that hold skin layers together are lacking. Without that link, routine touches, like getting dressed, holding a hand; can cause blisters, open wounds, and chronic pain.

EB Research Partnership funds science to change that.
Our goal: cure EB and turn those discoveries into help for countless other rare diseases.

EB still waits for its cure, but only for now.

🧬 Join the fight and donate through the link in our bio

#EBResearch #epidermolysisbullosa #lifewithEB #HealEB

Epidermolysis Bullosa (EB) is a group of rare, life-threatening genetic disorders where the proteins that hold skin layers together are lacking. Without that link, routine touches, like getting dressed, holding a hand; can cause blisters, open wounds, and chronic pain.

EB Research Partnership funds science to change that.
Our goal: cure EB and turn those discoveries into help for countless other rare diseases.

EB still waits for its cure, but only for now.

🧬 Join the fight and donate through the link in our bio

#EBResearch #epidermolysisbullosa #lifewithEB #HealEB

Epidermolysis Bullosa (EB) is a group of rare, life-threatening genetic disorders where the proteins that hold skin layers together are lacking. Without that link, routine touches, like getting dressed, holding a hand; can cause blisters, open wounds, and chronic pain.

EB Research Partnership funds science to change that.
Our goal: cure EB and turn those discoveries into help for countless other rare diseases.

EB still waits for its cure, but only for now.

🧬 Join the fight and donate through the link in our bio

#EBResearch #epidermolysisbullosa #lifewithEB #HealEB

Epidermolysis Bullosa (EB) is a group of rare, life-threatening genetic disorders where the proteins that hold skin layers together are lacking. Without that link, routine touches, like getting dressed, holding a hand; can cause blisters, open wounds, and chronic pain.

EB Research Partnership funds science to change that.
Our goal: cure EB and turn those discoveries into help for countless other rare diseases.

EB still waits for its cure, but only for now.

🧬 Join the fight and donate through the link in our bio

#EBResearch #epidermolysisbullosa #lifewithEB #HealEB

Robbie Twible sat down with Dr. Jeff Heddles, the donor behind our Matter of Time $1 Million Match, to ask what inspired him to step forward for the EB community.

His answer reminds us what this match is really about... belief, urgency, and the chance to move research faster.

Our match is now 80% complete, but the final 20% matters. It could help support 6–7 new EB research projects, up to half of a Phase 1 clinical trial, and faster progress toward treatments and a cure for Epidermolysis Bullosa.

🦋 Donate today. 100% of every donation goes directly to research.

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

From a dunk tank in Cleveland, Ohio with EBRP supporter Abeona Therapeutics to the breathtaking waterfalls of Bajos del Toro, Costa Rica with this year’s Sophia’s Hope Award recipient and Plunge sponsor Chiesi Global Rare Diseases — these unique events remind us that there are SO many ways to make a Plunge happen.

Whether it’s a pond, pool, ocean, dunk tank, waterfall, or someone’s backyard, every splash helps build community and make an impact for EB research.

We continue to be amazed by the creativity, heart, and dedication behind this growing global movement.🦋

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.

Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.

When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.

That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.

From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!

#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC

🦋 100% of your donation goes straight to EB research

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.

Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.

When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.

That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.

From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!

#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC

🦋 100% of your donation goes straight to EB research

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.

Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.

When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.

That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.

From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!

#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC

🦋 100% of your donation goes straight to EB research

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.

Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.

When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.

That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.

From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!

#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC

🦋 100% of your donation goes straight to EB research

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.

Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.

When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.

That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.

From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!

#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC

🦋 100% of your donation goes straight to EB research

We are approaching one year since #MatterOfTime premiered at @Tribeca 🦋

What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.

Now we move with them, and for those with Epidermolysis Bullosa.

#MatterOfMiles is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 – June 28. Lace up with us!

We are approaching one year since #MatterOfTime premiered at @Tribeca 🦋

What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.

Now we move with them, and for those with Epidermolysis Bullosa.

#MatterOfMiles is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 – June 28. Lace up with us!

We are approaching one year since #MatterOfTime premiered at @Tribeca 🦋

What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.

Now we move with them, and for those with Epidermolysis Bullosa.

#MatterOfMiles is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 – June 28. Lace up with us!

We are approaching one year since #MatterOfTime premiered at @Tribeca 🦋

What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.

Now we move with them, and for those with Epidermolysis Bullosa.

#MatterOfMiles is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 – June 28. Lace up with us!

We are approaching one year since #MatterOfTime premiered at @Tribeca 🦋

What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.

Now we move with them, and for those with Epidermolysis Bullosa.

#MatterOfMiles is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 – June 28. Lace up with us!

A massive thank you to the Seattle @mariners and San Diego @padres for playing in support of @ebresearch! Every Vedder Cup game helps raise awareness for Epidermolysis Bullosa (EB) and fund research for a cure. From the players to the fans and everyone showing up to the ball field – thank you!

Starting Kindergarten is a big milestone and Ethan is taking it on with determination! ⭐

Ethan isn’t letting anything hold him back from making friends, staying active and embracing this new chapter.

Alongside his journey, EB Nurse Specialist Rebecca Saad shares why planning and the right supports can make all the difference for children with EB to thrive.

Read Ethan’s story here: https://ow.ly/oGba50YQnvB

#InformMagazine

Starting Kindergarten is a big milestone and Ethan is taking it on with determination! ⭐

Ethan isn’t letting anything hold him back from making friends, staying active and embracing this new chapter.

Alongside his journey, EB Nurse Specialist Rebecca Saad shares why planning and the right supports can make all the difference for children with EB to thrive.

Read Ethan’s story here: https://ow.ly/oGba50YQnvB

#InformMagazine

Starting Kindergarten is a big milestone and Ethan is taking it on with determination! ⭐

Ethan isn’t letting anything hold him back from making friends, staying active and embracing this new chapter.

Alongside his journey, EB Nurse Specialist Rebecca Saad shares why planning and the right supports can make all the difference for children with EB to thrive.

Read Ethan’s story here: https://ow.ly/oGba50YQnvB

#InformMagazine

Starting Kindergarten is a big milestone and Ethan is taking it on with determination! ⭐

Ethan isn’t letting anything hold him back from making friends, staying active and embracing this new chapter.

Alongside his journey, EB Nurse Specialist Rebecca Saad shares why planning and the right supports can make all the difference for children with EB to thrive.

Read Ethan’s story here: https://ow.ly/oGba50YQnvB

#InformMagazine

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

And just like that, the @padres win the Vedder Cup! 🦋⚾

To every fan, player, and family who showed up for EB awareness during this series, thank you.

We were honored to have Patterson take the mound and throw the first pitch to EBRP CEO Michael Hund, and so grateful to share such a meaningful night with Lucas and the Mates family. Patterson, Lucas, and their families are the heart of this mission and the reason we show up.

Seattle is AHEAD in the city vs. city donation challenge and tonight is your LAST CHANCE to win a custom Vedder Cup jersey with your name on the back. Entries close at 11:59PM. 🔗 in bio.

📸: @timdurkan

We did it. 💙

Thanks to this incredible community, the 2026 Plunge for Elodie raised $603,246, surpassing this year’s goal and bringing the movement’s total impact to more than $3.5 million raised for EB research since 2018.

To everyone who plunged, donated, fundraised, sponsored, shared, volunteered, or cheered us on — thank you. This milestone belongs to all of you.

A special thank you to Dr. Jeff Heddles, whose generous matching gift helped double the impact of donations and bring us even closer to a world without EB.

And we’re not done yet…there’s still time to donate! We have one final Plunge happening in Pittsburgh on 5/30! 💙 #plungeforelodie

Meet Robbie, an aspiring sportscaster living with Epidermolysis Bullosa, the rare skin disease known as the butterfly disease.

And off the field of the #VedderCup , something bigger is happening.

For Robbie and the 500,000 people worldwide living with EB, the Vedder Cup isn't just a rivalry. It's hope. Every dollar raised goes directly to EB research, funding treatments and one day, a cure for those like Robbie.

And there's a way for YOU to be part of it.

Visit the links in our bio to see how you could win something truly one of a kind, a custom Vedder Cup jersey personalized with your name on the back.

Raffle closes May 17 at 11:59PM. Winners announced May 18.

🦋 ICYMI: The Vedder Cup is the Seattle @Mariners vs San Diego @Padres rivalry named after @EddieVedder of @PearlJam who founded EB Research Partnership alongside Jill Vedder to help fund a cure for EB. This year, the second half of the series is live at T-Mobile Park in Seattle, and the Padres are leading 3-0.