Joining Jack Blog
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. It’s pushing back the feared milestones of losses we know lie ahead. It’s not a cure but it’s a step in the right direction and everything we have all been working for.
Being the parent of a child on a Clinical Trial
As a parent of a child with Duchenne you constantly wrestle with the decisions you make. One of the toughest decisions we have had to make was whether to put Jack on a clinical trial. You might wonder why that was a tough one if that’s what I spend my time advocating and fundraising for.
When I first started writing this blog, I felt like it was a bit of a selfish blog to write considering everything, but I feel like it needs to be written because, as parents, if we don’t protect ourselves, we can’t protect our children. Duchenne parents have been really worried about COVID-19 for a while.
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?’
As a family we need and love our holidays because of the underlying heartbreak we live with every day as we watch our son’s muscles waste away. Eventually it will be impossible for us to take Jack on holiday and make the precious memories we cherish with him. Incompetence and error by Jet 2 holidays has ruined our holiday.
My email to Federal Drug Administration
A personal perspective on the U.S. Federal Drug Administration’s Advisory Committee meeting for Sarepta Therapeutics exon 51 skipping Drug Eteplirsen by Alex Johnson mother of eight year old Jack Johnson who suffers with Duchenne Muscular Dystrophy.
It’s a strange question to ask someone like me. I think it's pretty obvious. But here’s another question: Does your motivation change? And the answer, I think, is yes. Yes I think it does. Well it certainly has done for me.
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? While guaranteeing that this situation will not arise again and that other rare disease indications will be speedily addressed in a streamlined and fair process in the future. There are four things we urgently need to draw your attention to and need your help with!