Very exciting update from Pfizer and CHDI.  They’re investigating drugs from Pfizer that block something called “phosphodiesterases”. These drugs have already been tested in humans, and seem to benefit HD mice.  They’re hoping to test in small pilot human trials in 2013, followed by a 6-month trial starting in HD patients in late 2013 or early 2014.              See HDBuzz.net    today 1.3.2012

INFORMATION FOR PATIENTS, FAMILY AND CARERS. IF YOU ARE A PATIENT UNDER THE CARE OF NHNN HUNTINGTON’S DISEASE CLINIC OR IF YOU HAVE CONCERNS ABOUT A PATIENT UNDER THE CARE OF THE NHNN HUNTINGTON’S DISEASE CLINIC CONTACT THE CLINIC AND AN APPOINTMENT WILL BE BOOKED FOR YOU IN THE NEXT CLINIC. YOU CAN ALSO E-MAIL OR LEAVE A MESSAGE WITH YOUR NAME AND CONTACT NUMBER, THE PATIENT’S NAME DATE OF BIRTH AN D HOPITAL NO (IF KNOWN). THE CLINIC WILL RING YOU BACK WITH THE TIME AND DATE OF THE APPOINTMENT. IF THE CALL IS URGENT A MESSAGE WILL BE PASSED TO ONE OF THE AVAILABLE CLINICIANS WHO WILL CALL YOU BACK.

CLINIC HOURS: MONDAY: 1PM-4PM

WEDNESDAY: 9.30AM-12.30PM

FRIDAY: 9.30AM – 12.30PM

Contact Details:

HD Clinical nurse specialist Desiree Salanio: 020 3448 3776   desiree.salanio@uclh.nhs.uk

Priscilla Smart (team secretary) 020 3448 3420  priscilla.smart@uclh.nhs.uk

Visit the ‘Pages’ tab and click on the ‘Newsletter’ link.

SAT 5TH NOVEMBER: BONFIRE NIGHT AT THE SOUTHEND HD ALLOTMENT, SHERBOURNE GARDENS, SOUTHEND SS2 6QD. 6PM ONWARDS…BBQ, BONFIRE,  FIREWORKS, PUMPKIN MAKING FOR KIDS, ADULTS £2 KIDS FREE. BRING A FEW FIREWORKS IF YOU CAN.

Our AGM for Southend Branch is on Thursday 27th Oct. Nominations for Committee posts or comments for Any Other Business to be forwarded to the Chairman/Secretary by 25th Oct in writing or e-mail, to David McDonagh, 35 Edith Road, Southend on Sea, Essex, SS2 6JU – superbug1@hotmail.com

Venue: Ekco Social and Sports Club, Thornford Gardens, Southend on Sea, SS2 6PU. 11am during our normal meeting. Finish at 1pm ish. Please come and support those who support you and exercise your right to vote for those who you wish to represent you.

The AGM of the Southend Branch of the Huntington’s Disease Association

will take place at 11am on Thurs. Oct. 27, 2011

at the Ekco Sports and Social Club, Thornford Gardens, Southend on Sea, SS2 6PU.

All members are urged to attend.     Please come and support those who support you.

AGENDA

1. Apologies
2. Minutes of last AGM
3. Chairman’s report
4. Treasurer’s report
5. Election of Officers
6. Any Other Business

*Nominations for any persons
wishing to stand for election – or topics for discussion under Any Other
Business should be forwarded to the Secretary/Chairman  two days prior to the AGM. David McDonagh, 35 Edith Road, Southend on Sea, Essex, SS2 6PU – superbug1@hotmail.com

The election of officers will be
by a show of hands unless more than one nomination is made for any one post, in
which case a ballot shall take place.

PLEASE WATCH AND TELL YOUR FRIENDS:

Lifeline: Huntington’s Disease Association
BBC1
TX Sunday 18 September 16:45

Repeated
BBC2
Wednesday 21 September 13:30

 Forthcoming dates for Southend HD Branch….

Weds. 31st August. 12 noon. Carers-only meeting for HD,
hosted by Alison, at the  Ekco Social Club,
Thornford Gardens, Southend SS2 6PU.
This is for any carer of HD, and NOT just for our branch members. All HD carers welcome.

Thurs. 1 Sept.- this Thursday the BBC are filming our branch meeting at the Ekco…this is for a National Appeal on BBC1 and later BBC2 for HD Awareness and Fundraising, to be shown on  Sun Sept. 18 at 4.50pm. Our footage will be part of the appeal – to show people just some of the aspects of our support group. It’s a 9 minute appeal showing many aspects  of the HDA, one of which is support group activities. It will be hosted by Shane Richie, (who will probably film his bit in London). Fingers crossed we do a good job.

BBQ and scarecrow making day…weather permitting…over
the allotment Sat. 3rd Sept. primarily a family day especially for the kids.

Stock Donkey Derby….. Sun 4th Sept. Sharon and Kevin will be running a stall for Chelmsford
Branch. The Donkey races are brilliant fun.

AGM Telford – last call for names to Colin please.
Oct. 7th to 9th ,  you pay £50 per person, the branch will subsidise the rest. Transport will be organised.

Saturday 12th November an “East of England” Family Day will be held at Aldbury, Hertfordshire SG11 2HZ. The event will run from 11am to 5pm we will hire a coach. Meals to be booked or
take your own. More next week from Alison.

Music Night – Dec. 2nd (Fri). A cracker of a night, must not miss this one. Tickets will be on sale later. Music from our own talented members, friends and supporters.

Christmas Meal – Thursday Dec. 15th at the Ekco – after our usual meeting…

MUSIC NIGHT 2011

Hi folks, Southend HD Music Night is on Friday Dec. 2nd 2011 at the Ekco Social and Sports Club, Thornford Gardens, Southend, SS2 6PU. Performances from branch members, friends and supporters. It’s always a BRILLIANT  night out. Tickets will be available nearer the time