Leinster House Awareness

We need YOUR help in contacting TDs and Senators

The Huntington’s Disease Association of Ireland (HDAI) will deliver a presentation in Leinster House on Wednesday, March 23rd at 11am.

We will highlight the barriers families affected by Huntington’s face when requiring services. We will call on TDs and Senators to support our ask for a working group to be established to investigate the needs of people with Huntington’s disease and their families.

What’s going on?

HDAI, clinicians with a specialist interest in Huntington’s disease, (Prof Orla Hardiman and Prof Niall Pender, Beaumont Hospital and Prof Jennifer Hoblyn, Dr Kieran O’Driscoll and Dr Tom Burke, Bloomfield Hospital), and John Eden, former CEO of Scottish Huntington’s Association have come together in recent months to advocate for the service that families affected by HD desperately need.

On February 1st our group met with Minister Butler and representatives of Minister Rabbitte’s Department to highlight the barriers families currently face and to seek their support to address the inadequacies of a non- specialist service. Deputy John Lahart also attended the meeting and has invited us to make this presentation at Leinster House.

HDAI has been corresponding with TDs across the country asking them to support our request.

What are we asking you to do?

We would like you to send an email to your TD, asking for their support. You can use the text in the sample below or if you prefer, you can write to them in your own words. you can find who your local TD is and get their contact details using this website: https://www.whoismytd.com/

What happens next?

Keep us posted at info@huntingtons.ie if you get a reply so that we know which TDs are supporting our request.

Now is a great time to act. Let’s keep this momentum going!

Sample Email

Dear Deputy,

I believe you have been contacted by the Huntington’s Disease Association of Ireland to ask for your support to highlight, with relevant Ministers and policy makers the need for specialist Huntington’s services in Ireland.

My family have been affected by this condition and we have found it very difficult to get the necessary services we need:

[provide examples]

Professor Pender’s article published in the Irish Times discusses the unique challenges of HD: Understanding the unique impact of Huntington’s disease (irishtimes.com)

This survey by the Huntington’s Alliance highlights the difficulties for families

Huntington's disease Family MattersSurvey Findings(1).pdf (huntingtons.ie)

Unlike families in most European countries Irish families have no specialist services or access to clinical trials.

I would be grateful if you can support the request to establish a working group to investigate the needs of people living with HD and their families and to make recommendations about what to do.

( * exclude after March 23rd - I also ask that you attend Huntington’s Disease Association of Ireland’s all-party awareness presentation on the 23rd March, at 11.00am in Leinster House.)

Yours sincerely

[Name]