A Global Movement for EB
Hi everyone,
There's a real sense of momentum building across our community right now.
From this weekend's Plunge in Melbourne, to a new cyclling challenge across South Australia, to progress through our national and global research partnerships - everything we're doing is moving us closer to easing the burden of EB today and accelerating the path to a cure.
What strikes us most is how it all comes together. Individual actions become something else entirely - colour, movement, collective energy that could not exist in isolation. That's what we're building. A community where every contribution, every action, every voice matters. Thank you for being with us.
Here's what's been happening - and what's ahead.
❄️ The Melbourne Plunge 🌊
2025 Melbourne Plunge for Jacob
This weekend, our community comes together for the Plunge in Melbourne - and the energy is already extraordinary.
Together, we've raised over $40,000 so far, with more expected over the weekend. But there's still more to do, and we couldn't be here without the incredible support of the Burmeister family, and Jacob - one of our EB heroes here in Melbourne - who are the heart and the driving force making this happen.
We're donning our superhero costumes and diving into Williamstown Beach. Saturday's forecast is cool and rainy - an extra challenge for everyone stepping up and showing up for the EB community. That's the point. That's the commitment.
There's still time to join us!
Event details for Saturday 11th April:
Location: Meet at The Kiosk by d'Asporto (99 Esplanade, Williamstown)
Time: 10:00am arrival - we plunge at 10:30am
What to bring: A warm change of clothes and a good towel!
Dress code: Superhero costumes highly encouraged!
We’d love to see as many of you there as possible - whether you’re plunging in or supporting from the sidelines.
Whether you're taking the plunge yourself, cheering from the sidelines, or following along online - your part in this matters.
Donate to Support the Plunge for Jacob
🚴Terry's Cycle for a Cure 🚴
From Ceduna to Adelaide, South Australia - every kilometre for a cure.
Later this month, Terry Stephens will commence an epic endurance challenge to raise funds for EB research. Over 10 days, he’ll ride more than 1000km - connecting and advocating in the towns along the way.
"Starting in Ceduna feels symbolic. It's the edge of the state, the edge of comfort - and a reminder that big change often starts in remote places." - Terry Stephens.
This isn't Terry's first time fundraising for EBRPA, or his first fitness challenge. Last year, he climbed the seven highest peaks on each continent on a Versaclimber - raising $12,000 for EBRPA!
Thank you, Terry! We can't wait to see what you do this time.
More details - including the full route, where you can cheer him on from (both in South Australia and online), and how you can ride with him for a section or sponsor his journey - will be shared soon.
Get in touch with Jade at jade@ebresearch.org.au to sponsor Terry, connect with him as he rides, or donate to Terry’s Cycle for a Cure.
🔬 SMART CRC – Australia's EB Research Focus
We're thrilled to share that we recently announced our first Expression of Interest (EOI) for research projects at the Smart CRC Victorian Showcase - to a room full of Australia's leading researchers, biotech leaders, and clinicians.
The message was crystal clear: EB is on the agenda of the best scientific minds in the country.
Our first research priority: chronic itch
Itch may sound like a simple challenge compared to developing curative therapies. But try telling someone with EB that in the middle of the night when they can't sleep because the itching won't stop.
People living with EB and their families know this all too well - chronic itch is a relentless reality. It's constant, it disrupts sleep, and it drives the itch-scratch cycle - where scratching damages skin further, complicating healing and treatment.
Through the largest global EB research priority-setting initiative - a partnership involving EBRPA alongside other global EB organisations - more than 800 patients, carers, and clinicians identified chronic itch as the number one unmet need.
When we speak with Australian families, they echo this: itch is the everyday struggle that exists across all EB types and severities, and it's largely unaddressed by current therapies.
We're excited to have some of Australia's smartest research minds focused on this challenge — working toward treatments that will genuinely improve quality of life for people living with EB right now.
What is the Smart CRC - and what does it mean for EB research?
The Smart CRC brings together 63 partners across government, academia, biotech, and industry to solve critical bottlenecks in developing and manufacturing regenerative therapies. As a Core Partner, EBRPA secures dedicated researchers, matched co-funding that amplifies every philanthropic dollar, and access to Australia-wide biotech infrastructure and expertise. Think of it as a research lever: every dollar invested has the potential to unlock significantly more in scientific progress - and it positions Australia as a leader in regenerative medicine for rare diseases globally.
Meet the Australian Research Advisory Group
None of this would be possible without our volunteer Research Advisory Group - leading scientists and clinicians who bring rigour, oversight, and Australian research perspective to everything we do. Our heartfelt thanks to each of them.
Everything we're building - from community events like the Plunge, to individual challenges like Terry's ride, to global research partnerships - is powered by people like you.
Thank you for being part of it.
With gratitude,
EB Research Partnership Australia
