Patient Liaison Service: Hello!

13th April 2015

Kathy Hemestretch & Family
My Name is Kathy Hemestretch, I have just taken on the roll as Patient Liaison Officer. This is my first “job” for 20 years, as some of you will know me as “Kieran’s Mum”

Our precious son was diagnosed with ALD in 1985 when he was 9 years old. Our lives were changed forever as we were thrown into a world of disability, and all the challenges that entails. After genetic testing, four other female family members were diagnosed as carriers of ALD. My sister and I have since developed AMN.

Kieran sadly passed away last year and I was left with a massive void in my life. I had spent so many years caring for my son and fighting for him, what do I do now? I had always said that one day I would assist others who needed help, so this job is ideal for me, and hopefully I will be able to help you. Over the years it has been a great comfort for me to know that Sara was on the end of the phone if I needed her, I hope that you will feel free to contact me too.

I would like to contact some of you if that’s ok. In the meantime you can phone me or e-mail me.
Home: 01273 703519
Mobile: 0748 093 1787


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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