Can you take one quick action? Urgent access to Givinostat for boys with DMD

It is now one year since Givinostat was approved by the European Medicines Agency, yet Irish boys with Duchenne muscular dystrophy are still waiting for access to this life-changing treatment. 

We are asking you to email your local TDs and senators to urge their support to secure urgent access to Givinostat. 

You can simply click here to use the email template and select your constituency.  

On 11th June last year, families, supporters and advocates came together in Leinster House to call for access to Givinostat. Next week, on the 11th June again, we will return to Leinster House, one year on, with the very same message: 

Get Givinostat to our boys now. Time Is Muscle. 

Sadly, the reality for many families is now even more urgent. 

Over the past year, while reimbursement processes have continued, boys have continued to lose strength, mobility and independence. Families have watched abilities become harder or disappear altogether – getting up from the floor after a fall, rising from a chair independently, climbing stairs, getting in and out of the car, keeping up with friends, and for some boys, even walking. 

Some boys who were eligible for Givinostat when it was approved may no longer be eligible today. Others are dangerously close to losing that opportunity. 

For families, this is heartbreaking. 

Time Is Muscle, and we cannot afford to lose any more of it. 

This is why we are asking for your support once again. 

MDI is helping coordinate a campaign email to TDs and Senators, and we are asking as many people as possible to send it. 

Every email sent, every TD contacted and every voice raised helps keep the urgency of this issue front and centre. 

With the HSE Drugs Group expected to meet next week, this is a critical moment. 

We are asking for: 

• Urgent access to Givinostat 
• No further unnecessary delays 
• Proactive rollout planning so treatment can begin as quickly as possible once approved 
• Continued political support so boys in Ireland are not left behind. 

Please support the campaign by sending the email to your local TDs and senators and sharing it with friends, family and supporters. Click here to use the letter template and select your constituency. 

One year on. Still waiting. 

Don't delay. Give our boys Givinostat today. 

Thank you for your continued support, advocacy and solidarity. 

Together, we are stronger. 

With hope, 

Láidir le chéile, 

The MDI Team, in solidarity with the Time is Muscle Ireland campaign