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Please take the time to read some snippets from an open letter to (the company who came close to a cure)
Please do not abandon the myotonic dystrophy program.
For people living with myotonic dystrophy, this is not simply a clinical trial result. It is our lives.
It is the child growing up wondering why their body will not work as it should. It is the young adult wondering how long they will be able to work, walk, drive, or care for their family. It is the parent watching a son or daughter lose abilities most people take for granted. It is the person struggling with grip and hand function, mobility, fatigue, swallowing, breathing, cardiac complications, pain, and the many other manifestations of this devastating, multisystem disease.
And it is the families who have spent years waiting for something that could fundamentally change the course of this disease - and their lives.
The myotonic dystrophy community has lived without an approved disease-modifying treatment since the disease was first identified in 1909. Novartis itself has acknowledged that
DM1 remains a disease with hich unmet need and no approved treatment options.
Every day, people living with myotonic dystrophy wake up in bodies that are gradually losing function. Every day, families adapt their lives around a disease they cannot stop. Every day, people wait for researchers to find an answer.
We cannot promise you that del-desiran is the answer.
But we can tell you that the question is far too important to stop asking when your own data indicate that there may still be something there to investigate.
Please complete the analysis.
Please explore the secondary endpoints.
Please explore the exploratory endpoints.
Please engage with regulators and independent experts.
Please talk with the global patient community.
And please -do not abandon myotonic dystrophy.
We ask Novartis to stay.
We ask you to finish the work.
We ask you to follow the science wherever it leads.
If you would like to donate to supporting the fight for people with myotonic dystrophy please do so here:
https://give.myotonic.org/fundraiser/7553486
Thank you for taking the time to read and learn about this :)
03/09/2026
New Blog Post Up!
The eyeliner mistake I fix in the chair more than any other? Drawing a brand-new eye instead of lining the one you already have.
After years in the makeup chair, here are the tricks I actually use 👇
*Tightline first — press liner into the roots of your upper lashes. Instant definition, no visible line.
*Map your wing to your lower lash line — that angle is your flattering flick. Follow it and the eye lifts.
*Dots, then connect — never one held-breath swipe. Steadier line every time.
*Wonky wing? A little concealer on a flat brush carves it crisp. We don’t start over — we clean up.
That’s four. The full guide — formula picks, liner for every eye shape (hello, hooded eyes) and the 2026 looks worth trying — is now on the blog.
✨ Save this for your next liner attempt
✨ Share it with the friend whose wings never match
✨ Follow for more pro makeup tips, minus the 12-step overwhelm
Full guide → link in bio
You asked, I listened!
Yesterday I put it to you — what do you actually want to learn about? Brows won the vote, hands down. So today’s blog post is all about getting that soft-groomed brow that quietly pulls your whole face together.
New post is live now, link in bio 🤍
What should I cover next? — save this, and drop your vote in the comments below!
30/07/2026
Trust is the whole job, if I’m honest.
An actress before a scene. A model before a shoot. A bride before she walks out to everyone she loves. What happens in that chair can make or break the next few hours — sometimes a career, always someone’s confidence.
All these years in, I still don’t take that lightly or for granted.
Thank you for trusting me with this one, and for putting into words what I always try to do but rarely know how to explain.
Grateful doesn’t quite cover it.
24/07/2026
Emma’s destination wedding in Spain will always be one for the memory box 🤍
Glasgow bride, Glasgow groom, both families flying out for the trial — and me sat there with my own Glaswegian roots getting properly homesick in the best way. My dad’s side is from Glasgow, so having a room full of that accent felt like a little full-circle moment.
Bridal hair and makeup for Emma’s destination wedding on the Costa del Sol, Spain — one of so many reasons I love working with couples who travel to Spain and across Europe to say I do :)
Photographer Jonathan Wedding Photographer
Venue Hotel La Fuente del Sol
Makeup & Hair
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