HUNTINGTON’S
HUNTINGTON’S DISEASE ASSOCIATION DISEASE ASSOCIATION NORTHERN IRELANDNORTHERN IRELAND Families at the heart of all that weFamilies do at the heart of all that we do
HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND
Families at the heart of all that we do
HDANI Newsletter - Christmas 2013 and New Year 2014 Newsletter printing is generously sponsored by NIE Staff and Pensioners Charity Fund Foreword from the Chair
need more volunteers. (See latest update in ‘What the Board’s been Doing’)
Dear members, friends and supporters, This is my first chance to say “Hello” to you all and wish you a “Happy New Year”! Of course, we none of us know what the New Year will bring but it is certainly best to be hopeful, and to work to try and make the hopes turn to reality. This is going to be an important year for Huntington’s Disease in Northern Ireland, and for the Association. There is “Breaking News” on the development of new treatments, which if they pass all the tests ahead, will make life with HD better. It’s a really exciting time, with a great deal of time and money going into new research, and the fruits of work done over the past twenty years beginning to come through the pipeline into real treatments! There is also “Breaking News” on the future of the Association. As you may know, I took over as Chair on an interim basis to allow the Association to keep functioning whilst new Officers were found to take over as Chair, Treasurer and Company Secretary. The full support of all our Members is needed, if HDANI is to keep going! We are lucky to have some new Board members, with Roisin McKeating, Sarah-Louise Leonard, and Majella joining the Board but we still
As usual, we are constantly working to bring in new members as we’re finding that new families are increasingly looking to the Association for mutual support and reliable information. There is also a new UK Strategy on Rare Disease, which will help to make sure that care and treatment for those with rare disease like HD is better co ordinated- and that people aren’t left behind or left out just because their disease is a rare one. This is important: it means that rare diseases will have to be taken into account in planning and organising services, and not forgotten about. HDANI, as a key part of the Northern Ireland Rare Disease Partnership, will be making sure that the voices of patients and families are heard in the planning processes, and that their needs are given proper attention. The Joint North-South international Rare Disease Day event, on 28 February 2014 in Riddell Hall, Belfast, is a great chance to learn more about what the Rare Disease Plans (North and South) mean for all those living with rare disease: and a great chance to show policy makers what a difference good care and treatment makes. Best wishes for 2014
Christine Collins (Chair)
Contact: Member Services and Newsletter: Errol Walsh Tel: 028 2177 1812 Email: errol@hdani.org.uk Telephone Support Service: Pat McKay Tel: 028 90221950 and Errol Walsh Tel: 028 21771812 Youth contact: Tel: Cat Martin 07785 332063 Email: hdyo@hdani.org.uk HD Nurse Specialist Team: Belfast City Hospital Tel: 028 9504 7930
Website: www.hdani.org.uk
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Sponsorship Many thanks to SDC Trailers from Toomebridge for their generous monthly donations to HDANI Many thanks to The Abbey Centre branch of Marks & Spencer whose current fundraising total exceeds £13,000 in the run up to Xmas. Marks & Spencer Plc has also donated £3,000 to date in match funding (detailed below under Donations)
DONATIONS AND FUNDRAISING – 11TH JULY – 30TH NOVEMBER 2013 Many thanks to everyone who has contributed to our funds in whatever way you have elected to do so. At present we have eight members who donate by direct debit each month which brings in £96.00 per month.
It can be as little as £2.00 or as much as you want. Also, if you are a tax payer and fill in a gift aid declaration, for every £1.00 you donate the tax office gives us an additional 25p. Errol can provide bank mandates for standing orders and gift aid forms if anyone is interested. Tel: 028 2177 1812 or Email: errol@hdani.org.uk
Could we encourage you or any of your families or friends to consider donating this way?
Donations
Mrs M Campbell - £100.00
Donations via Bank - £529.35
C Houston - £10.00
M & C McCann – (Wedding Favours) - £250.00
G Miscandlon - £40.00
Marks & Spencer PLC (match funding) - £2,000.00
D McKay - £20.00
A & M Hunter - £25.00
IMO the late R Brown £175.00
NIE Staff & Pensioners Charity Fund - £1,012.00
IMO the late Mr B Kelly £400.00
G Baird - £100.00
IMO the late P Smyth £270.00
IMO the late L Davis - £850.00
Baroness May Blood - £300.00
Donations via Virgin Money Giving - £8.75
G & M McConville - £60.00
P Byrne (Birthday Gifts) £690.00
D O’Kane - £20.00
P Hesketh - £20.00
Marks & Spencer PLC (match funding) - £1,100.00
IMO the late A Harper £350.00
T Lamont - £25.00 Anon. - £200.00
A M McCrudden MBE - £30.00
IMO the late M Burns £435.00
R Smith - £20.00
Northern Ireland Fire & Rescue Service - £52.50
Anon. - £100.00
Anon. - £31.50
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The Production Company £200 (in services)
Events Car Boot Sale – K & A Clarke £140.00
Collection Boxes
N Alberts - £10.05
Four Roads, Ballykinler £56.82
G Miscandlon - £7.20 Anon. - £14.62
R McCaig - 25.00 S & N Clark – 10.14 D O’Kane - £16.00
Colaiste Feirste School, Belfast - A Kelly - £247.04
N Alberts - £11.94 Spar Shop, Killylea - £51.10 The Moore Family - £19.84
Various - Armagh Support Group - £435.90 Newspapers Sales – M & S £20.00
R Smith, Ballykinler - £34.98 J Warnock (Chinese Takeaway) - £65.16
Pin & Wristband Sales Annual Conference - £31.00
Saveway Spar - £17.41 Limavady Support Group £300.00 ‘Rose Room’ concert –Glasgow £332.50 Fashion show – Leanne Godfrey - £1,114.60
Belfast Support Group - £16.00 Armagh Support Group £102.60
Penny Jars P McKay -32.45 M Gaughan - £4.81
ANNUAL BALLOT DRAWN ON 20TH SEPTEMBER 2013 AT LA MON HOUSE HOTEL Many thanks to all who sold or bought tickets for our annual ballot. After expenses (printing of ballot tickets) we brought in £1,826.00!
G Baird – Hamper – (D O’Kane)
PRIZEWINNERS
R Robinson – W5 tickets - (D O’Kane)
J Strawbridge – Overnight stay in Wicklow - (Nuala Clark)
D Allen – BBQ Set – (R Donnelly)
R Murphy – Return ferry to Troon - (M Donnelly) H McGarry – Down Royal Horseracing – (D O’Kane) P Brunty – Jungle NI – (J Warnock) G Wright – Paintballing – (D O’Kane)
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Fundraising and other Events: Newsletter Sponsorship: HDANI are extremely grateful in these recessionhit times for the support of The NIE Staff & Pensioners Charity Fund who have generously contributed £1,012 towards the cost of printing our newsletter. Errol Walsh (HDANI) Peter Mullan and Alexis Totten (NIE Staff and Pensioner’s Charities Fund).
Annual Charity Bike Ride: We are also very grateful to the ‘NI Bikers and Trikers Riding for Charity’ club who have announced that they intend to increase their initial support for HDANI with an annual charity ‘ride out’ on our behalf… The next ‘ride out’ is on Sunday May 11th at 12 noon. You can keep up to date on details of their activities and show your support and appreciation by liking their Facebook page at www.facebook.com/groups/ nibikersridingforcharity
Concert: Many thanks to Errol’s musical friends in Glasgow who ran a concert on Sat.30th in Glasgow in aid of Huntington’s disease in Scotland and Northern Ireland.. The fabulous ‘gypsy jazz’ band “Rose Room” headlined the concert and Errol opened the show on behalf of HDANI. The concert raised nearly £700 and the proceeds were divided between HDANI and SHA.
Marks & Spencer November bag pack: Board members set the example for volunteering at the recent Marks and Spencer fundraising bag-pack in the Abbey Centre in Glengormley on 2nd November!
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Grace Henry brought five members of her family from Antrim to man the tills and Paula McElhinney made space in her hectic Saturday family schedule to make the trip to Belfast from Limavady with three of her family. Errol and Susan put in shifts as well to help support the wonderful M&S staff who regularly volunteer throughout the day whenever there’s a charity
bag pack. On this occasion there were actually more volunteers than there were tills to man! But, it proved to be a blessing, allowing volunteers to take rest breaks… and having someone to step into the breach meant that the tills were manned continuously… a fact which paid real dividends in a fantastic collection of £1,222.00!! M & S staff were pleased to see our HDANI volunteers showing our own commitment and it boosted morale all round!
errol@hdani.org.uk or check our website at www.hdani.org.uk if you and/or your friends and family would like to volunteer a couple of hours. It’s actually good fun as well!!! M&S in Abbey centre have raised over £10,000 for HDANI so far this year! Let’s help them boost it even further!
There’s another bag-pack on December 14th but this newsletter should be gone to print by then… however, HDANI remains the nominated charity until April 2014 so there will be other opportunities in the New Year. So please… think about sparing some time to come and help out the team if you can. Errol should find out soon the bag-pack dates for next year so please contact him by phone 028 21771812, text on 0795 4098051, email at
Fashion show: The glamorous Leanne Godfrey, a close friend of equally glamorous Limavady member Eleanor Kelly, was moved to put on a fashion show in support of HDANI at the Tides Restaurant on the north coast between Portrush and Portstewart. The event was well supported by Limavady group members and Leanne’s social circle and they raised a magnificent £1,014.60! Congratulations to all who supported the event and thank you to all the local businesses who contributed raffle prizes. Eleanor Kelly & Leanne Godfrey’
Christmas Dinners: The Limavady and Omagh support groups held their annual Xmas dinner at The Classic
Restaurant in Limavady and the Silver Birches in Omagh respectively, and sent in these pictures of the evening. Thanks to all who turned out to celebrate the festive season together!
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A Fond Farewell! At the Belfast Support Group meeting on December 5th, two loyal and long-serving members of the Association said goodbye to the group. Betty Alcorn had been a member for 39 years since 1974 and her close friend Chris Houston had been a member for over 15 years. They lived quite close to one another and except in rare instances when one or other was ill, or away for some reason, they attended most HDANI functions and support group meetings together. Chris would pick Betty up in her car and together they supported each other and their wider family in HDANI for many years. They feel they have now reached an age where advancing years and ill health makes it difficult for them to get to meetings so with great sadness they’ve decided
to say goodbye… although they will continue to support HDANI in any way they can. So, goodbye to Betty and Chris from all their friends in HDANI over the years and may you both enjoy your retirement in peace and comfort!
WHAT THE BOARD HAS BEEN DOING The Board has been very busy in recent months. Many thanks to everyone involved in the planning and running of the Summer Camps, the Children’s and Young People’s Programme for next year, and the HDANI Conference, which this year had the added element of Jimmy Pollard’s visit! While Jimmy was here, together with Majella and Errol, we took the opportunity to hold a one-day Conference for Health and Social Care Professionals, on “Meeting the Challenges of Caring for Huntington’s Disease”. The Public Health Agency’s Research and Development Division provided support for this initiative as a unique opportunity to further the knowledge, understanding and experience of Northern Ireland Health and Social Care Staff involved in Huntington’s care. The event was a sell out with over 50 staff from across Northern Ireland, and from across a wide range of professional groups attending (Nursing staff, Social Workers, Genetic Counsellors and Doctors). Feedback from participants was exceptionally good and it’s clear that this event has increased awareness of HD in a key group of frontline staff. The other major challenge facing the Board is that of ensuring the smooth handover of essential Board functions to a new generation of Board Members. For the information of
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non-HDANI members who receive only this Newsletter, a letter went out to our membership in recent weeks. The essential points in that letter are covered below and we should be very grateful if you could give them your consideration as well so that HDANI can continue to offer an effective support service to the HD community across N. Ireland “By law, we need the following officers to serve on the Board of Trustees for Huntington’s Disease Association Northern Ireland’: Chairperson (post now filled), Treasurer and Company Secretary. These offices are not as daunting as they may appear and current office bearers will not be ‘throwing’ their successors in at the ‘deep end’! Volunteers will be given 6 months ‘shadowing’ and support between 1st April 2014 and 26th September 2014. The board is also looking at further ways to help office bearers, e.g. buying in professional financial services where necessary, and rotating the board meetings (5 per year) around different venues to reduce the travel to Belfast (volunteer travel expenses will be paid). HDANI appreciates that many of you may perhaps be symptomatic… or in a caring role… and therefore unable to put yourselves forward. But perhaps you could consider if any of your friends, colleagues, family members, people in
your church/community/club groups etc. might be willing to volunteer their time and most importantly their commitment to HDANI? We need to fill the offices of Treasurer and Company Secretary by 31st January 2014 at the latest, otherwise we may be forced (under the law) into the process of ‘winding down’ the Association. Please give this appeal your full consideration and attention!
Feel free to ring either Errol at (028) 21771812 or Marilyn at (028) 92670768 before the end of January with your ideas/suggestions or any questions or concerns you may have. We look forward to hearing from you! Wishing you and yours a peaceful Christmas.”
Marilyn Kerr (Hon Treasurer/Trustee)
In Memoriam:
Peter Smith, from Ballykinlar in County Down was born on May 24th 1944 and passed away with Huntington’s disease on September 22nd 2013. He will be sadly missed and fondly remembered by his sister Rosaleen and all the family.
Denis Ryan: Everyone at HDANI who knew him sends their condolences to all at Huntington’s Disease Association Ireland (HDAI) on the sad loss of Denis Ryan on Sept 21st after a two year battle with cancer. Denis was the chair of HDAI until he became ill and he was one of those memorable and thoroughly engaging men that could always lift your spirits when things were getting you down. He was self-effacing, very funny, very astute, totally dedicated to his wife Ann and unswervingly committed to HDAI and the HD community everywhere. He will greatly missed and long remembered.
Cross border co-operation in health issues: International Rare Disease Day: 28 February 2014 Following last year’s very successful Joint NorthSouth Rare Disease Day event, held in Dublin City Hall, we are now planning for the second such event, to be held in Riddell Hall, Queen’s University, Belfast, on 28 February 2014. The International Theme for the Day is “Joining Together for Better Care”, and we hope this second Joint North-South Event will be both fun, and provide further impetus to the efforts to improve cross border co-operation in health issues. We hope that Ministers from Northern Ireland and the Republic will attend, and that the speakers and discussions will show how progress has been made since last year, in the development of Rare Disease Plans, and in taking forward the theme of “Joining Together for Better Care”.
There will be Poster Competitions, for both medical/scientific and technical issues; and for children to show how living with a rare disease affects them and their family; and during the lunch break, a chance to get to know others and to join in a variety of activities. We need to get the word out across all our networks to make sure we have a good turnout from across every county; and make this a day to remember with pride; and we will need to have volunteers on hand before and during the event for such tasks as registration, talking to the press, managing the Poster Competitions, etc. So please pass the word around, and contact RDD2014@nirdp.org.uk for information or to volunteer!
Christine Collins.
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HDANI Conference for health professionals…. Knockbracken Health Centre Sept 19th 2013 Firstly, many thanks to the Health & Social Care Research & Development Division of the Public Health Agency who supported this hugely successful event which exceeded all our expectations! 55 delegates registered for HDANI Conference for health professionals at Knockbracken Health Centre Sept 19th 2013 Marilyn welcomed everyone as chair and introduced Michelle Tennyson from the Public Health Agency who delivered the opening remarks. Jimmy Pollard’s intimate, highly knowledgeable and humorous presentations on “Thinking about Thinking with HD” and “The Huntington’s Disguise” were wonderfully engaging and his personality proved to be a huge hit with all the delegates. Majella’s workshop too was highly successful and looked at issues specific to N. Ireland. Errol gave a short presentation on wider family engagement and young people and screened a research update and message of hope from Ed Wild.
processes of individuals suffering from HD and a need to look at HD and support for HD in a much wider family context. (Small selection of comments below) Consultant Psychiatrist - “Delivered by people who obviously speak from experience and not from a text book” Genetic Counsellor - “An excellent training day. I would strongly recommend it to anyone who works with people who have HD in their families” Social Worker - “This training should be mandatory for all trust staff (adult services/managers/policy makers) Care Manager – “Essential for all staff working with HD.. Trust, care staff and nursing staff” Social Worker – “Jimmy Pollard – I love you. Errol made me realise the immense need for social work with HD families and Majella could use more support from Social Work Services”
The conference was a resounding success and greatly exceeded our expectations. We had hoped for 50 applications and, allowing for the usual no-shows, would have been pleased with an audience of 30. In fact, we had 70 applications with 55 delegates attending, all of whom gave the conference and Jimmy Pollard’s presentations in particular a huge ‘thumbs up’!
There were a few suggestions for possible minor improvements but a very satisfying majority verdict thought that it “couldn’t be improved on” and the conference ended on a real high with much enthusiasm from all the delegates. Hopefully the knowledge they gained will translate into better understanding and care for HD patients and their families.
Of the 48 evaluation forms returned 35 rated the conference as ‘Excellent’ and the remaining 13 as ‘Very Good’. Delegates included genetic counsellors, university lecturers, students, occupational therapists, social workers, nutritionists/dieticians, care coordinators/managers, nursing staff, physical health and disability practitioners and a consultant psychiatrist.
Jimmy’s presentation was captured on DVD and will prove an immensely valuable training tool for health professionals. Order via errol@hdani.org.uk
All delegates agreed that the information they received would prove extremely useful in their varied roles. They spoke of gaining a unique insight into the vital importance of understanding the communication difficulties and thought
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Two HD conferences on successive days was a daunting organisational prospect and bumped up the stress levels for a couple of weeks! But, a big thank you to everyone who helped with the multitude of big and little tasks that accompanied the effort, from obtaining funding for the professionals conference to printing out name badges and helping with registry etc for both conferences!
Family and Carer’s Conference….. La Mon Hotel & Country Club Sept.20th 2013 After registration, this year’s family conference started with the business of the AGM. It was very good to see almost a full complement of the board in attendance throughout the day. Financial report for the year was delivered by Marilyn after which Errol delivered his Development Report. Board member David Finegan spoke about some of the challenges facing us in the coming months and years and appealed for family members, if possible, to play a more active role at every level in order to help focus attention on the needs of the HD community. In the annual elections Christine Collins stepped up from Vice Chair to Chair for one year to allow recruitment of a family member as chair which has been a long-standing HDANI tradition. This has allowed Marilyn to step down as Chair and resume her role as Treasurer. Grace remains for the coming year as our energetic company secretary and other serving members were re-elected. We had the great pleasure of welcoming Majella to the board along with a new professional member Roisin McKeating with an impressive HR background. Also elected was Sarah Louise Leonard, a family member from Armagh.
The main act was next up… “give it up for Mr James J. Pollard from Lowell, Massachusetts, USA!” Again, despite some sound problems with the house PA system, Jimmy stepped up to the mark and delivered his message with the same warmth and intimacy that has made him such a much loved personality on the HD conference circuit right around the world. After lunch Cat gave us a short update on the progress of the fledgling youth programme and the benefits they derived from the summer camps. Cat was followed by Eamon Doherty from the Law Centre who gave an excellent and comprehensive talk on the complex new benefit reforms which are in the pipeline. It was an awful lot to take in at one sitting, a fact which Eamon appreciated and he has left me a copy of his Powerpoint presentation (which I can supply on request or perhaps post on our website) along with a kind offer to clarify anything that is particularly baffling. Finally, the afternoon was closed out by Ed Wild’s personal ‘hello’ to his fans at HDANI and a brief update on new developments as well as his earnest message of hope that help is on the way from the world of scientific research. This too will be uploaded online on our website www.hdani.org.uk. In the evening we enjoyed another fine meal from the La Mon kitchen, and the raffle which was practically a clean sweep for Dorothy O’Kane from Ballymena! (Thanks to Sharon Rosbotham for sourcing the prizes again!) and finally we repaired to another suite for drinks and conversation and a little country music before hitting the hay and a well deserved rest! Many thanks to everyone who attended and we hope you learned some new and useful information and had a relaxing day!
Jimmy Pollard and May Blood MBE with delegates Many thanks to Marilyn for her sterling service as Chair over the past 12 months, and to Christine, Grace and all the board members for their continued effort and support in their various roles. It was also great to hear our patron, Baroness May Blood MBE, address our members once again with her much appreciated words of praise and encouragement for all.
Next year we’ve booked Charles Sabine (international journalist of high repute) who is HD positive. Charles, like Jimmy Pollard is highly committed to the cause of Huntington’s and shares a very positive message about how he and others can deal with HD in their lives. You can read up on Charles Sabine online at http://www.npr.org/templates/story/story. php?storyId=120610850 Next year’s conference will be held in La Mon once again on Friday Sept 26th 2014 if you want to get it in your diary well in advance.
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HD Buzz Shorts Can ‘sad mice’ help treat Huntington’s disease? http://en.hdbuzz.net/132
Behaviours studied in mouse models suggest to scientists that Huntington’s disease mice have symptoms that are consistent with depression, a common symptom amongst HD patients. Though it’s hard to know for sure, it seems as if this depression is not just caused by the circumstances of an HD patient’s life, but might be part of the brain problems that happen in the disease. Depression in people carrying the Huntington’s disease mutation occurs at a higher rate, even before they develop symptoms of HD. This suggests to scientists that depression might reflect very early changes in the brains of people carrying the HD mutation, and so they’re very interested to understand what causes it.
How long is too long? Rethinking the Huntington’s disease ‘gray area’ http://en.hdbuzz.net/133
“The Huntington’s disease genetic test involves counting the number of CAGs at the start of the HD gene. Some results are in a ‘gray area’ - larger than normal but smaller than the range that causes HD. Now, by closely studying people with CAG counts in the intermediate range, the PHAROS study has found some subtle differences in mood and behavior. These results don’t mean that intermediate CAG counts cause HD, but they do suggest they may have some effects on the brain, which need to be studied in more detail.” N.B. *** Many members are intrigued, and sometimes confused, by the relationship between C-A-G protein counts/repeats and their impact on the development (or not) of HD. This report contains a very clear and useful explanation of that relationship.
Does a ‘rusty hinge’ cause Huntington’s disease? http://en.hdbuzz.net/134 “A major advantage to researchers studying Huntington’s disease is that, unlike in many other brain diseases, we know exactly what causes it. A mutation in a single gene tells cells to make a
harmful protein: ‘mutant huntingtin’. It’s mutant huntingtin that damages neurons and other cells, causing the symptoms of HD. In the 20 years since its discovery, we’ve figured out a lot about what the huntingtin protein does normally, and what goes wrong when its toxic twin, mutant huntingtin, is made. Figuring out how the mutant huntingtin protein causes damage is the central problem of Huntington’s disease research. Now a team of Canadian researchers led by Dr Ray Truant has shown that the protein has an important ‘hinge’ function, which works less well in cells with the HD mutation. Human cells could be used to identify drugs that help the hinge to work, but they’ll still need to be tested in animals, including mice”
Could muscle problems help explain movements in Huntington’s Disease patients? http://en.hdbuzz.net/136
“Proper contraction of muscles is crucial for coordination; errors in this process might help explain movements in HD A proper balance of electrically charged particles is required for muscle cells to respond appropriately to stimuli. However, a recent report by a group of scientists from California State Polytechnic University concludes that disruption of this balance occurs in Huntington’s disease – causing HD mouse muscle fibres to contract more easily than they should. So, there may be a defect, not just in the brain, but in the muscle fibres that could help explain the involuntary movements of HD” There are a series of live reports from the Huntington’s Disease World Congress in Brazil earlier this year from the HDBuzz team which is aptly entitled Buzzilia! Here are the links to these reports including videos from the first two days. http://en.hdbuzz.net/137 Day 1 http://en.hdbuzz.net/138
Buzzilia Video: Day 1 http://en.hdbuzz.net/143 Day 2 http://en.hdbuzz.net/139
Buzzilia Video: Day 2 http://en.hdbuzz.net/146 Day 3 http://en.hdbuzz.net/140
Buzzilia Video: Day 3 http://en.hdbuzz.net/147 Day 4 http://en.hdbuzz.net/141
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And… now… wait for it!
There’s a Video feature about a Huntington’s disease research project... in space!!! http://en.hdbuzz.net/142
“The huntingtin protein, which in its mutant form causes Huntington’s disease, is difficult to study because it forms clumps rather than neat crystals. Now, young HD researcher Gwen Owens of California Institute of Technology is reaching VERY high to try to crack the problem. In a special video interview screened at the recent HD World Congress, HDBuzz spoke to Gwen about her ‘out-of-this-world’ plans…”
The sweet lowdown: Huntington’s disease brains use sugar differently http://en.hdbuzz.net/144
“To make clinical trials more efficient, HD scientists are on the hunt for biomarkers. An example of a successful biomarker is the measurement of blood pressure, which enables doctors to estimate the risk of heart attack and stroke. We now know that drugs that reduce blood pressure will help prevent heart attacks and stroke. That accelerates the development of new drugs, because there’s no need to wait until people go on to actually have heart attacks. We would love to have a similar measurement in HD patients. Rather than giving a huge group of people drugs and waiting many years to see if the progression of HD is slower, we’d like to have measurements we can use to test, quickly, if a HD therapy is having beneficial effects. Changes in how much sugar the brain uses are seen even before the brain starts to change physically, suggesting this might be a useful thing to track in HD clinical trials.”
What the ‘big neurodegeneration breakthrough’ in Alzheimers means for Huntington’s disease http://en.hdbuzz.net/145
“Many people in the Huntington’s disease community have noticed reports highlighting a recent study from the University of Leicester, which the BBC claimed “could treat Alzheimer’s, Parkinson’s, Huntington’s and other diseases. The underlying study is well-executed research of some importance. However, the press hype is out
of all proportion to the impact of this research. What does this study actually show, and what does it mean for HD? While these are findings interesting, we don’t think they deserve the hype they are receiving.”
New study sheds light on regional degeneration in HD http://en.hdbuzz.net/148
Why do certain brain cells die in HD? New research suggests is may be due to the efficiency of cellular recycling. Certain regions of the brain degenerate more quickly than others in Huntington’s disease. Steven Finkbeiner’s team concludes that this discrepancy is based on differing abilities of brain cells in these regions to quickly identify and dispose of mutant HD protein. Specifically, neurons from vulnerable brain regions are slowest to clear the protein.
Could a new “jaw-dropping” breakthrough help treat Huntington’s Disease? http://en.hdbuzz.net/149 The news has recently been full of stories about CRISPR, a new “jaw-dropping” DNA-editing technology. Hype or hope? CRISPR has been described as having potential application in Huntington’s disease — but, as always, the truth is more complicated than the headlines suggest. CRISPR is one of a number of exciting new gene therapies, and while “repairing the genomes of people with genetic diseases may well become a standard treatment sometime in the future, and it’s very exciting to see the first steps down that long path.”.. there are still significant problems to overcome in the short term. The above excerpts from HDbuzz bring you links to the latest HD research online. If you do not have internet access and would like to find out more about any of these articles simply contact Errol 028 2177 1812 and he’ll be happy to print out the entire article(s) and post them to you.
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Regional Support Group Information Belfast Support Group Time: 2pm - 4pm
‘Syndicate 2’, 3rd Floor Grosvenor House, Glengall St, Belfast, BT12 5AD (beside the Europa Bus Centre - handy for train & bus!) First Thursday in the month (except Jan/Feb and July/Aug) Contacts: Pat (028 9022 1950) or Errol (028 2177 1812)
Armagh Support Group Time: 7.30pm
Armagh City Hotel, Third Wednesday in the month (except Jan/Feb) Contacts: Rita (028 3752 6429) or Sylvia (028 3833 8238)
Limavady Support Group Time: 8pm The Classic Restaurant, Main St., Limavady Every 4-6 weeks (ring for confirmation) Contacts: Paula (028 7776 7664) or Errol (028 2177 1812)
Omagh Support Group Time: 8pm
The Wave Centre 18 Holmview Ave, Campsie, Omagh Second Monday in the month (except Jan/Feb and July/Aug) Contacts: Moira (028 8164 8717) or Errol (028 2177 1812)
24 hour “Telephone Support Service” Pat (028 9022 1950) and Errol (028 2177 1812) Please note: If no-one is available to take your call please leave a message and someone WILL get back to you ASAP
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Huntington’s Disease Nurse Specialists Belfast City Hospital Tel: 028 9504 7930