DEAR Ellen and Michael,

I do hope you don’t mind me getting in touch and please note this is not a request for money!

I have read your story in the South Wales Argus and just wanted to drop you a line to say hello and to thank you for raising awareness of this little known yet devastating disorder. 

I also wanted to express my sincere condolences for the loss of your brother – having lost my own son to ALD I can empathise with how difficult this must have been. 

We would like to share your story on our Facebook page and I am emailing you to request permission for this and to add your brother’s name to our memorial list of those lost to ALD. 

I also wanted to let you know that, if there are other instances of ALD in the family, we do offer a support service including contact with others in similar circumstances, practical information and updates on latest innovations in treatment and research. 

Also, if you would like to learn more about the work of ALD Life we can add you to our database to receive regular updates. I wish you the very best of luck with your marathon run and that you raise a huge amount for your chosen charities – both very deserving causes. 

I’ll be thinking of you both on August 19th and I do hope it’s not too painful!

Sara Hunt
Chief Executive Officer
ALD Life