NEW Association to support Huntington Disease Patients and Family Members; Launch Saturday 22th October 2022.
A newly formed NGO was established on 31st January 2020, called the Malta Huntington
Disease Association. The association was formed to offer support for people who have this
condition, create a space for solidarity, knowledge, and awareness and to improve the lives of those with the condition and their families. Due to covid interruptions among other reasons the official launch was delayed to 22th October 2022, which will be held at the Imperial at 4-7pm. We will be holding an introductory launch to anyone interested to hear more about the organisation and ways to be involved.
To book your attendance please register here: subscribepage.io/huntingtonsmalta . Anyone wishing to volunteer and help us with the launch please so get in touch on huntingtonsmalta@gmail.com.
Huntington disease is a progressive brain disorder that causes uncontrolled movements,
emotional problems, and loss of thinking ability (cognition). Adult-onset Huntington disease, the most common form of this disorder, usually appears in a person’s thirties or forties. Early signs and symptoms can include irritability, depression, small involuntary movements, poor coordination, and trouble learning new information or making decisions.
Many people with Huntington disease develop involuntary jerking or twitching movements known as chorea.
As the disease progresses, these movements become more pronounced. Affected individuals may have trouble walking, speaking, and swallowing. People with this disorder also experience changes in personality and a decline in thinking and reasoning abilities. This disease is often hidden and associated with shame, in Malta many of these patients feel alone and not supported as the disease is largely misunderstood by patients, family members and in Malta we lack the specialisation from professionals which leads to patients not getting enough care.
As an association we wish to:
• Raise the awareness about this rare disease on the Maltese Islands
• Create a community of support for all HD patients and families
• Lobby the government for measures to support HD patients
• Keep our members up to date on new developments in the HD international community
• Organize social support activities for members
• Encourage and work towards bringing HD specialists and professionals to be
established in Malta, such as neurologists, psychologists, physiotherapists, nutritionists,
careworkers and all relevant professionals that can support specialized care for HD
patients.
• Aiming to create a specialized centre for HD patients.
We are also in need of donations and monetary support to help us realise our mission. If
you wish to contribute you may here subscribepage.io/huntingtonsmalta.
Other ways to donate: Send a blank SMS to:
50617311 for €2.33
50617928 for €4.66
50619274 for €11.65
Make a phone call:
51002028 for €20
51802037 for €25
51902029 for €50
To receive information on updates, knowledge on HD or upcoming events please click
https://bit.ly/35Qizg0 to form to be part of our mailing list.
If there is anyone you know with Huntingtons disease in Malta who may benefit from our support please direct them here
https://bit.ly/35Qizg0
For more info contact us on huntingtonmalta@gmail.com or call +356 77428416.
