IHA interviews Robert Pacifici from CHDI
Svein Olaf Olsen, President of the International Huntington Association, interviews Robert Pacifici, the Chief Scientific Officer in CHDI, at the EHDN Plenary Meeting 2022. They had a great conversation about new updates in clinical trials and the importance of participating in them.
The Voice of the Huntington's Disease Community
To end Huntington’s Disease (HD) May Awareness Month 2022, we asked HD patients, family members and professionals all over the world 3 big questions about the disease in order to raise some awareness:
1. How did HD change your life?
2. What is most challenging?
3. What kind of support would help you?
Watch this emotional video to understand how important and unique is our voice. We are stronger and unstoppable together.
Positive for Huntington's Disease
During #HuntingtonsDisease Awareness Month, Yousef Gamal El-Din speaks about the devastating illness in detail for the first time. It’s the untold story of the pain, the struggle and the green shoots of hope. Yousef’s mother was diagnosed with the disease in 2007. Over the years, HD took its toll on the entire family. And now Yousef is at a 50% risk of inheriting Huntington’s disease and seeing the same fate as his mother.
Fifty Percent - short documentary (2021)
With a 50% chance of inheriting a fatal disease, is it better to know your future or live in the moment?
Lillian Hanly has a 50/50 chance of inheriting Huntington’s, a neurodegenerative disease. With a number of her family testing positive for the gene, and her mother already affected by it, she must come to a decision. Get tested now or continue to live on in the unknown.
“You may lose me well before I die.” – Lillian Hanly
My Mysterious Body: Huntington's Disease
Chris Hiron was 33 when Huntington’s Disease started to affect his physical movements. His fine motor skills started to deteriorate and he began to have less control of his limbs. A genetic condition, carriers of the gene have a 50% chance of passing it on to their children. It can affect people both physically and mentally and it will eventually shorten their lives. Micheal Hanly, who so far is asymptomatic, says that carrying the gene really focusses him on living his best life. Micheal’s baby son has a 50/50 chance of having inherited the disease, but the search for medical solutions is advancing. Researcher Dr Malvindar Singh-Bains is exploring the possibility of genetically engaging with the Huntington’s gene to limit the effects of the disease. While a cure may be some time off, anything that can slow the disease’s progress will be welcome news.
Rare Disease Day 2022
To celebrate Rare Disease Day 2022 we asked people to join by sharing a photo where they could share their colors with us, the motto of this year’s Rare Disease Day. We wanted to raise awareness for Huntington Disease (HD), a rare and hereditary disease that affects around 7 to 12 cases per 100 thousand people worldwide.