Joining Jack Blog
Happy 18th Birthday to our main man Jack! Here's our Top 10 for you, have an awesome day!
A year of battles and finally a breakthrough
Thank you for the support to reach a milestone moment — a message from Alex, Andy, Jack, James and Millie as we close 2025 with two approved treatments for Duchenne.
My friends will get the chance that I got more than four years ago
Jack Johnson, 16, shares his personal journey on the givinostat clinical trial — and what the drug's approval means for his friends living with Duchenne.
Over the past year it has been increasingly hard to share details of Jack's journey with Duchenne. Today, we said goodbye to our car and hello to our wheelchair accessible vehicle.
It is with an immense amount of pride and gratitude that we are publishing this, our first Policy Report — a complete picture of what it is like to live with DMD in the United Kingdom in 2024.
Jack Johnson, Wigan Warriors, Media Assistant, Work Experience
Jack blogs about his work experience with Wigan Warriors — learning graphic design, interviewing England rugby league players, and getting a taste of life at the club.
A very difficult story for two families with close bond
In the weekend's Daily Mail, Emily has told a very difficult story for both of us. We are very lucky that Jack is on Givinostat but it preys heavily on our minds that so many are not who could benefit.
First ever treatment for ALL Duchenne patients is recommended for approval
Vamorolone, the first ever treatment for ALL DMD patients, has been recommended for approval by the European Medicines Agency — and it's thanks to you, our incredible supporters.
Research Study into effects of Hydrotherapy Treatment in Duchenne Patients
Jack has enrolled into a research study at the Royal Preston Hospital evaluating hydrotherapy for health in boys and adolescents with Duchenne.
Thank you for joining us in 2022
Our battle against Duchenne muscular dystrophy is now 10 years old and we have been reflecting on that milestone throughout the year and some of our achievements over the past decade.
The data Jack's trial has generated has shown that the drug Jack is taking is slowing down the progression of the disease.
Being the parent of a child on a Clinical Trial
Clinical trial drugs can and do have side effects. We watch Jack take a medicine every day and wonder what it's doing to him on the inside. Our lives are filled with hope but also questions and uncertainty.
Duchenne parents have been really worried about COVID-19 for a while. As parents, if we don't protect ourselves, we can't protect our children.
We want to thank everyone who has messaged and supported us since I published my blog about the way Jack and our family were treated by Jet 2 last week.
'Do you have proof your son is disabled?'
Incompetence and error at Jet 2 holidays has ruined our holiday. Here are extracts from the emails I have sent to the CEO.
Five years on from Jack's diagnosis. What really drives me forward is the acute awareness that time is running out.
My email to Federal Drug Administration
A personal perspective on the FDA's Advisory Committee meeting for Sarepta Therapeutics exon 51 skipping drug Eteplirsen, by Alex Johnson.
What's your motivation? Does it change? Mine has. I founded Joining Jack because I wanted to save my son's life. But along the way I fell in love with a community.
Can the government show its commitment to patients with rare diseases by making an exceptional decision for the 80 boys for whom this treatment may otherwise not be available until too late?