Updated: Feb 26
I hope everyone had a lovely Christmas, I certainly did and I can’t wait to bring in the New Year. I am extremely excited about 2018 as I think it will be a good year! Im also hoping in 2018 I can write a post every month and be more active on social media. 2018 also means GRADUATION for me!!
Just before Christmas the members of the Huntington’s community got what I would say an early Christmas present, some hope! There was a major breakthrough in the Huntington’s Disease scientific research, I remember the day it hit my little world.
I was sitting in a lecture and my friend Chloe text me, “Have you seen the news?” Straight away I googled BBC News for that day(December 11th 2017), and the first thing I saw was Huntington’s disease Breakthrough. That’s when it started; my phone began to blow up! I was getting messages and notifications from friends, family and the many Huntington’s Facebook groups I am involved with. So what did I do? I started bawling, after I left the class room of course. I’m pretty sure my friends saw it in my eyes though, it was pretty obvious. I was shocked for a few hours, and I had not actually read an entire article, I was trying to remain calm, take class notes and reply to the 1Million notifications coming through on my phone.
Where were you, when you heard the news? Leave me a comment, tell me how it made you feel in that moment.
Daily Mail stated: “Has a ground breaking drug trial found a cure for Huntington’s? Researchers correct the defect that causes the devastating disease in the ‘biggest breakthrough in 50 years” BBC News reported: “Huntington’s breakthrough may stop disease”
The research team at University college of London conducted a trial on 46 patients where the drug was injected into the fluid that bathes the brain and spinal cord. The procedure was carried out at the Leonard Wolfson Experimental Neurology Centre. The first in human trial showed the drug was safe, as there were fears it may cause fatal meningitis, it was so well tolerated by patients and it crucially reduced the levels of Huntington’s on the brain.
Well that’s what I took from the BBC website, there are so many articles wrote on the topic, it was so hard to read them all. I’m still working through them. BBC was the first I read though! Here are some more articles from a simple Google search you can find, (these were all published on December 11th 2017 apart from Science Alert)
Ronan Duffy reported in The Journal: ‘’ A huge breakthrough has been made that could stop the devastating Huntington’s disease.’’ #medicine #science #Hutington’sDisease [Available from] http://www.thejournal.ie/huntington-protein-3745077-Dec2017/
Hannah Devlin reported in The Guardian: “Excitement as trial shows Huntington’s drug could slow progress of disease” [Available from] https://www.theguardian.com/science/2017/dec/11/excitement-as-huntingtons-drug-shown-to-slow-progress-of-devastating-disease
Peter Dockrill reported on Science Alert: “Huge Breakthrough as Experimental Drug Is First-Ever to Suppress Huntington’s Protein” [Available from] https://sciencealert.com/major-breakthrough-experimental-drug-suppresses-huntington-s-protein-first-time-ionis-httrx-gene
Sarah Knapton reported in The Telegraph: “Huntington’s breakthrough as early trial shows injection may stop disease” [Available from] http://www.telegraph.co.uk/science/2017/12/11/huntingtons-breakthrough-early-trials-show-injection-may-stop/
There were so many news articles covering the story about the breakthrough, Independent, newsweek and inews also covered it. Of course the main men themselves (Dr Ed Wild and Dr Jeff Carroll) covered the BIG NEWS! [Available from]https://en.hdbuzz.net/249 Jeff Carroll, “In an announcement likely to stand as one of the biggest breakthroughs in Huntington’s disease since the discovery of the HD gene in 1993, Ionis and Roche today announced that the first human trial of a huntingtin-lowering drug, IONIS-HTTRx, demonstrates that it reduces mutant huntingtin in the nervous system, and is safe and well-tolerated.” In Dr Carroll’s article on HD Buzz he covers these headings, o What’s this huntingtin-lowering stuff all about? o Reminder: what’s the history of this drug and trial? o So, what about HD? o What has happened now? o Now what I actually love this website, obviously because there talking about science and medicine they use big words, words that ‘normal’ people may not understand, so if you hold your mouse over the words it brings up a definition! How extremely helpful is that!! For the first time I actually ventured onto the second page of Google, as my lecture says, “if you ever want to hide a dead body, hide them on the second page of Google” who ever goes there?
What can all this research and this major BREAKTHROUGH mean for the future of HD? I think the biggest Question in a lot of people’s minds is, when will it be available? I saw so many people asking how they can be involved in the next stage of drug trials. It was heart warming to see. Part of me wishes I was tested so I could help. This was great news to receive and has made my family and I extremely hopeful for not only my future but also my brothers.
I hope this post has helped you understand and find some of the articles which explain the BIG NEWS! It is a major breakthrough and one I think we, in the Huntington’s community have all been waiting for !! I guess all we can do it wait and see what happens! Please check out my Facebook page #imnotdrunk @hdawarenotdrunk