Benefit concert for Finn
On 21 November 2026 at 6 pm, the Musikverein Edelweiß Busenbach once again invites you to its church concert at St. Katharina in Busenbach – this time as a benefit concert for Finn.
Finn gives us courage.
Finn is four, laughs a lot and lives with an extremely rare change in the SLC6A1 gene. A gene therapy in the USA could give him a chance.
€32,562 of €250,000 (first milestone)
As seen in
Meet Finn
Four and full of life.
Finn lives with his parents Bertille and David and his little brother Milo in Waldbronn, near Karlsruhe, Germany.
He is a real ray of sunshine: cheerful and quick to get excited about everything. He is happiest outdoors: in the sandpit, on the slide, roughhousing with his dad, cuddling with his mum – and always with Milo by his side.
What Finn lives with
Many things are hard for him.
Finn is not developing like other children.
- Learning
- Learning takes him much longer. What other children pick up in a few days, we often practise with him for months.
- Speech
- Speaking and expressing himself are hard for him. He rarely talks about himself or what he has experienced.
- Emotions
- Things quickly become too much for him. When something doesn't go his way, he has intense meltdowns.
- Attention
- He forgets a lot, often drifts off and then doesn't respond.
- Epilepsy
- Finn used to have more than 200 absence seizures a day. Today medication helps, but the seizures haven't gone away completely.
- Our biggest worry
- That Finn will lose the skills he has worked so hard for – as in dementia.
We love Finn just the way he is.
The cause
One single gene that doesn’t work properly.
Since February 2025, we have known why: Finn has a change in the SLC6A1 gene, a very rare condition.
Normally this gene helps the nerve cells in the brain to calm down again. In Finn, that doesn't work properly. That is why he has seizures, and why learning and speaking are so hard for him.
What this means for us
- Finn needs us as parents more than other children do.
- He has therapy every week.
- On top of that come many doctor's appointments and hospital stays.
The hope
A healthy copy of the gene.
Gene therapy delivers a working copy of SLC6A1 to the brain. The goal: improve brain function and stop Finn from losing skills he has already gained. The therapy isn't available in Germany; our hope lies in the USA, where in September 2025 a child with SLC6A1 received this therapy for the first time. Intensive research is continuing there.
~€1Mcost of treatment
2025first child treated worldwide
USAtreatment location
Our promise: if gene therapy doesn’t happen for Finn, every euro goes to SLC6A1 Deutschland e.V. or SLC6A1 Connect, and so to the families living with the same diagnosis. David serves on the board of SLC6A1 Deutschland.
Art for Finn
When words aren't enough, Bertille paints.
After Finn's diagnosis his mum started painting again. It grew into a community project: eight artists designed cards. The proceeds go to our fundraiser.
- Hope Collection · 5 cards€20
- Inspiration Collection · 5 cards€20
- Discovery Collection · 10 cards€37
- Complete Collection · 15 cards€50
How you can help
Together we can do this.
- 1DonateEvery amount brings Finn closer to the therapy.→
- 2Buy cardsGive art and help at the same time, from €20.→
- 3SharePass Finn's story on. Every share matters.→
Who manages the money?
We do, Bertille and David. “Finn macht Mut” is our family’s private fundraiser, not a charity or foundation.
Do I get a donation receipt?
No. Because this is a private fundraiser, we can’t issue donation receipts.
Want to make a bigger difference?
Whether it's a larger donation, an initiative with your company or a story about Finn – write to us. We reply personally.
Updates
Epilepsy Day (Germany)
SLC6A1 Deutschland points out: for unexplained epilepsy in early childhood, a genetic test can bring clarity. The SLC6A1 diagnosis has only existed since 2015.
Read more →Symposium in Denver
SLC6A1 Connect invites researchers and families to Denver on 3 and 4 December: one day of science, one day for families.
See the invitation →Second BNN article
BNN followed up on what gene therapy could do for Finn.
Read the article (in German) →Finn in the paper
BNN tells our story.
Read the article (in German) →The association is registered
SLC6A1 Deutschland e.V., founded in March 2026, has been officially registered since 8 September. Around 20 affected families are connected through it. David is on the board.
Visit the association →
Thank you for walking part of the way with Finn.
Every donation, every share and every message gives us strength for the next step.
Donate now