TOGETHER WE SHOULD FIND A CURE FOR HUNTINGTON’S DISEASE

HDA - Huntington's Disease Association - UK registered charity

Thank you for showing interest in my blog! I have chosen to do The Huntington’s Disease Association as they support my Grand-dad who has the disease. Also, they provide help and advice to my Mum as she cares for him most of the time. This is why I would like to raise money for this charity to provide them with the change they need to keep this wonderful charity going. The aim of this blog is to get people to understand more about HD and how it can turn people’s lives upside down.

HD is a hereditary disorder of the central nervous system and can affect both men and women. It usually develops in adulthood and can cause a wide range of symptoms. These symptoms include slight, uncontrollable muscular movements, stumbling and clumsiness, loss of concentration and short-term memory lapses, depression and changes of mood, sometimes including aggressive or anti-social behaviour. It is caused by a faulty gene on chromosome 4. Each person whose parent has Huntington’s disease is born with a 50-50 chance of inheriting the faulty gene.

Currently there is no cure for HD but there are many ways to manage symptoms effectively. Medication can be used to treat some symptoms such as involuntary movements, depression and mood swings. Speech and swallowing problems can be improved by speech therapy. Weight loss and symptoms like involuntary movements or behavioural problems can be prevented by having a high calorie diet. The social services in your local area can assist you with practical issues like appropriate adaptations to your home if necessary. They can also help with care at home or respite care. The HDA produces a full range of literature that looks at these problems in a bit more detail. If you would like to contact HDA call 0151 298 3298 or visit www.hda.org.uk.

So, why should you care? Sadly, this may happen to you or someone you love. Well they support people affected by HD and provide advice to professionals whose task it is to support Huntington’s disease families. They are financed by the generosity of Trusts, Foundations, the statutory and corporate sectors, Branches of the HDA and its members.

People who can provide help and advice are the Regional Care Adviser, Dietician, Speech Therapist and other professionals. They enable those affected by this disease to manage the changes effectively and positively.

You can join the Association and if you do you will receive the twice-yearly national newsletter and, if you’re local Branch produces its own newsletter, you will also receive a copy of that too. If you want to become a member as a family it is free but, as a charity, they rely on donations. Voting membership is also available once you have been on the mailing list for six months. If you are a voting member you will receive a copy of the HDA Annual Report and are eligible to vote at the Annual General Meeting.

They also have a range of fundraising, publicity and promotional items from collecting boxes to publicity posters, sponsorship forms etc.
• Had you heard about HD or the HDA before reading my blog?
• Do you now know more about it?
• Would you now support the HDA? (explain how)
• Would you try and get more people supporting this pressure group?
• Have I changed your opinion about people with HD? (explain how and why)
• And finally, could you please tell me your hometown and country (if not in UK)?
Thank you so much for taking time to read my blog! I hope I have informed you enough to help me with my aims. You have helped find the cure for Huntington’s disease!

Thanks again!
Andie