Tri4Albert – UK 6th July 2025
“Supporting the NR2F1 foundation is so important because without it we would feel so alone in our fight for answers and treatments” - Sean, BBSOAS Dad from the UK
To start, could you introduce yourself and tell us a little bit about your family? Where are you from?
My name is Sean. Adele and I are from the UK, where we live in a town called Beaconsfield (outside London) with our son Albert. We met through the dating apps while living in London, seven years ago, and connected over our love for music, nature, eating well and travelling. Three years ago we decided that we wanted to start a family when we got engaged and Adele fell pregnant with Albert.
Can you share a little about Albert’s journey — when did you first get his diagnosis, and what has life been like since?
Like all of our (BBSOAS) children, Albert started falling behind all of his milestones (apart from his teeth!) and by 10 months he faced the common issues associated with BBSOAS such as eating difficulties and building muscle. A few months before our wedding, Albert started experiencing seizures which were initially very short but progressively got worse to the point where he was medically induced into a coma on June 25th 2024. We were discharged from hospital two weeks before our wedding which managed to go ahead, but shortly after our big day we received the results of our genetic tests that Albert has BBSOAS.
Similar to Ashlee and Diana’s story we went through the 5 stages of grief, trying to find answers and questioning “Why us?”, “Why Albert?”, “What did we do wrong?”. After just passing the one year anniversary of Albert’s diagnosis all we say to new families that receive this diagnosis is, things do get better over time.
Albert has had such a positive impact on our life’s, we appreciate the things that many people take for granted, he us brought Adele and I closer together, he brings so much joy to our life with his infectious laughter, and while I do not wish BBOAS on any child, Albert enhances our life for the better.
What does the NR2F1 Foundation mean to you personally? How has it helped you and your family since Albert’s diagnosis?
During our search for answers we googled BBOAS and discovered the NR2F1 Foundation which has been so important to Adele and I. It answered the questions that doctors couldn’t. We were able to lean on people that had been through what Adele and I was going through and we no longer felt alone.
What inspired you to take on a fundraiser for the Foundation? Was there a particular moment that motivated you?
The decision to fundraise was driven by one of Adele’s bridesmaids, who signed Adele and I up to the Croyde Bay triathlon as a wedding gift (which probably says a lot about us). After receiving the diagnosis and the support from the foundation, we wanted to give back. Adele and I have raised money for large charities before, but what was different about raising money for the foundation was the direct impact it could have on our children. Finding treatments to help Albert was never going to be solved by just raising money for our child, and after seeing the amazing work that the foundation was doing (e.g. The Fruit Fly Drug Repurposing Project) we wanted to help.
You managed to raise an incredible $23,000 — tell us about how you went about it. What worked well? Did anything surprise you during the process? Any advice for other NR2F1 families who are thinking about fundraising but aren’t sure where to start?
Once we decided that we wanted to try the triathlon event as a fundraiser, we persuaded multiple friends and family to also join. With a triathlon you can split up the legs (swim, cycle run) into a relay team which allows more people to participate. My dad cycled a road bike for the first time. One of my uncles took up open water swimming for the first time. In total, we had 17 participants, allowing each person to raise money individually. I believe these people were also motivated like we were because we could see that the money raised would have a direct impact on children’s lives.
If anyone decided to fundraise in the future, my top tip would be to increase the number of people involved in the event. It doesn’t need to be a triathlon but could be long distance walk or hike. The most successful fundraising event was the coffee and cake sale that I organised within my work. It’s amazing what people will pay for a slice of cake or a coffee when they know it’s going to charity, and work agreed to match the money that was raised on the day.
How did it feel when you hit your fundraising goal? What kind of response did you get from your community, friends, or colleagues?
Our original target was $5,000 but Jennifer (Foundation President) gently pushed us to think big and we set our target as $10,000. Hitting $23,000 was unbelievable. Adele and I have been overwhelmed by the love and support from our network. We feel less alone in our battles and it’s an amazing feeling to know that the money raised will have a direct impact on our children’s lives. We would highly recommend it to anyone who is thinking about it.
Lastly, what would you say to other families about why supporting the NR2F1 Foundation is so important?
Supporting the NR2F1 foundation is so important because without it we would feel so alone in our fight for answers and treatments. Yes, we could have raised money for just Albert to pay for private treatments/therapy, but we felt the biggest way we can have a positive impact on our children is by coming together and helping each other out. We don’t have enough money to pay for research or drug trials ourselves!
Message from Jennifer Coughlin, NR2F1 Foundation President: A huge thanks to Sean, Adele, Albert and all their friends and family. Like Sean said, we can’t do this alone.
Thank you to all the team, we are so grateful to you all for supporting our BBSOAStrong.
o Daniel O'Brien
o Matthew Meehan
o Matthew Giddons
o Hannah Houghton
o Ben Moss
o John O'Brien
o Kevin Meehan
o David Marsden
o Sophie Marsden
o Kirsty Marsden
o Cathy Marsden
o Nick Marsden
o Peter Kelly
o Mick O'Brien
o Grace Meehan