Recent Posts

March 23, 2020
A Carer's Guide to COVID19

Firstly…. What a whirlwind few weeks! I don’t know about anyone else, but I am scared. I try not to be, but I am. I am in the frontline as a paramedic and exposed to patients with COVID19 symptoms most shifts. I am terrified of taking it home to my asthmatic daughter, or my severely […]

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January 30, 2020
National Young Carers Awareness Day 2020

It’s a day dedicated to recognising the little super hero’s holding families together in tough times. Below are the winners who captured my heart the most. Wisdom is 14 years old, his dad has Huntington’s disease. Every day he looks after his dad’s emotional needs and puts him first. His mum said “He often chooses […]

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January 30, 2020
“Our life in HD - family of 3...”

This is the beautiful blog post written by a lady, watching her husband change with Huntington’s disease. They have a 7 year old daughter, born through the miracle of PGD! (pre-genetic diagnosis IVF). Honest, raw and an eye opener. Link below..

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January 21, 2020
VACANCY: Unpaid Carer. 365 days a year. 24/7 on call.

Written for my Dad. By Emma Terranova Davis, Co-Director and Founder of CFMB not for profit Ltd. I have brand new vacancy… I really need to fill. I would love to get more care in… but I can’t afford the bill. Social services say I have too much. I’m a little bit confused. If I […]

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November 15, 2019
My Huntington's Journey: by Jami, 26, North Carolina.

My dad passed away my senior year of high school. We didn’t have a relationship. The same semester, I was in Anatomy class when my teacher wrote “Huntington’s Disease” on the whiteboard. She explained that this disease can be passed down through dominant genes in your DNA. I remember the moment it clicked. My dad […]

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October 3, 2019
'A-O-K'. Accept. Adapt. Overcome. KICK-ASS.

The last few blogs have been a little bleak to say the least! Today I wanted to post something a little fresher, maybe a recipe that might bake a little optimism into your life or inject a bit of hope in what seems a hopeless situation. Some practical suggestions and hopefully solutions.  **Disclaimer: Please discuss […]

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September 28, 2019
Our Shining Star

NB: If you're reading this on a smart phone, it may look easier to read by turning your phone horizontal) Sheldon James Brown, born in Oklahoma, on 2nd May 1991, and passed away 1st October 2004 due to Juvenile Huntington's Disease. Before I start this story, sent in by Sheldon’s Mum, I thought I’d share […]

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July 5, 2019
Knock Knock.. Who’s there? Huntington's Disease. It’s time to grow up, you’re a carer now…

One day I’m sneaking out of my friend's with her to meet boys and drink WKD (Yes I really was quite a rebellious teen, and yes this was you Gina)... the next day I’m dealing with the devastating news that my Mum has an incurable, degenerative condition called Huntington’s Disease. A disease that could also […]

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April 7, 2019
Progressive Supra Nuclear Palsy (PSP): Life with PSP

Welcome to this honest, heart warming blog post from a follower called Rachel, who has written about her Dad, who suffers from PSP. I sit writing this as I watch my dad sleep. He sleeps a lot now. The effort and routine of the morning routine and breakfast takes so much out of him that […]

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March 26, 2019
Jacqui, 53. HD-

Jacqui is the creator of ‘Sybil on Tour’ which raises money for the Huntington’s Disease Youth Organisation. Follow her on: Instagram: @sybil_on_tour Twitter: @jaq421 ‘Toss of the coin’: Testing for Huntington’s disease is not a decision I took lightly and setting the ball rolling took many years of deliberation and doubt. I have pretty much […]

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