COMPOSE - A clinical study to improve cognitive capabilities in people with Down syndrome

Dear Mark

I would be grateful if you could advise families of people with DS known to Sunnyfield about this study. I am responsible for the Univ of Sydney site.

Best wishes

Stewart Einfeld

Professor, Centre for Disability Research and Policy

Senior Scientist, Brain & Mind Research Institute

THE UNIVERSITY OF SYDNEY
T +61 2 9351 9213  
E stewart.einfeld@sydney.edu.au  | W http://sydney.edu.au/health_sciences/staff/stewart_einfeld.shtml

Subject: COMPOSE - A clinical study to improve cognitive capabilities in people with Down syndrome

We would like to ask for your assistance in letting colleagues and patients who may be interested know about a new nationwide clinical trial to determine whether a medication called BTD-001 can improve memory, language, attention and learning in people with Down syndrome.

Two sites in Sydney are involved in this study –at Neuroscience Research Australia and the University of NSW the research is being led by Professor Rhoshel Lenroot, Dr Robert Leitner and Dr Bruce Chenoweth, while at the University of Sydney the research is being led by Professor Stewart Einfeld.

Trials in an animal model of Down syndrome found that the medication helped learning and memory, and that effects lasted even after the medication was stopped.  Although there is a long history of using this same medication in people, particularly in dementia, this trial will also help to establish safety for use in people with Down syndrome.  Participants in the study take the medication or a placebo for twelve weeks, with several visits to measure its effects on cognition and monitor health.  A family member or carer would also need to attend appointments to provide information about function

As an organization working with people with intellectual disabilities, we would like to ask for your assistance in letting people know about this study through circulating information in newsletters, e-news, email updates, posting a link on your organisation’s website or facebook page, or through displaying our brochure and/or poster promoting the study (both attached; we can send hard copies of the brochure and poster upon request).

We have ethics approval from the South Eastern Sydney Local Health District (SESLHD), the University of NSW and the University of Sydney to conduct this research. If further ethics approval would be required for you to assist in advertising this study, please do contact us.

Further information is available on the study website www.compose21.com. People who are interested can also call a central number, 1300 659 729 to confirm their eligibility.

If you would like brochures or posters or to discuss this further, please contact Karen Burton, NeuRA/UNSW site coordinator on 02 9399 1882 (k.burton@neura.edu.au) or Lauren Rice, University of Sydney site coordinator on 02 9114 4106 (lauren.rice@sydney.edu.au).

Thank you for your assistance in promoting this study.

Sunnyfield Central Coast Auxiliary Minutes of March meeting

Minutes of Meeting 25 March 2014 at CLUB TUGGERAH,

Attending  9

Apologies  5 

The meeting opened 11.15 am.. 

Minutes of the previous meeting 

The minutes of the 25 February meeting had been previously circulated and were accepted as being read.

Business arising from previous minutes

Nil

Treasurers Report

John was absent and no report tabled.

Correspondence

As usual, our correspondence consisted of emails. All have been filed and dealt with 

General Business

The proposal from our last meeting that we should arrange for a representative of the NDIS to speak with us was discussed. There has been a delay caused by the absence of Jill Hall at her electoral office. She has been present at parliament  (she is the opposition whip) and has therefore been difficult to contact. Her electoral officer, Mr Chris Hall has been helpful and has organised a contact at NDIS for us. No arrangements were in place at the time of this meeting.

Bob Devetak advised that he is still in contact with Louise Dibbs who will be well remembered by our members for her assistance when we were establishing the Auxiliary. She is now working with the House With No Steps in  Newcastle, and has therefore some experience with the NDIS launch in the Hunter. Bob suggested she would be a good speaker for us. The meeting agreed and we will plan some suitable time for her if she is agreeable to the suggestion.

Paul reported that he had read a newsletter from an organisation called I D E A S which he had found interesting. Allan is to follow up.

Despite the lack of numbers, this was an interesting meeting and we covered quite a bit of ground. We expect to have some news and developments at our April meeting.

The meeting closed at 12.45

NOTICE of MEETING Sunnyfield Central Coast Auxiliary

DATE 22 April 2014

Note Day   TUESDAY

Note commencement time     11.00am

Note Venue CLUB TUGGERAH, Bryant Drive, TUGGERAH   (opposite Bunnings)

Plenty to discuss this month, including details of our May plans

Hope to see you there.

Allan Holswich