Tuberous Sclerosis Association

SSBP Educational Day-Cognitive and Behavioural Problems

Fiona — Fri, 22 May 2009 13:13:33 +0000

The SSBP (Society for the Study of Behavioural Phenotypes) is holding an educational day at Corpus Christi College in Cambridge, UK on the 16th October 2009. Dr Petrus De-Vries, a TSA Professional Adviser will be co-hosting the event. This day will focus on:

“How to assess and manage the cognitive and behavioural problems in genetic and neurodevelopmental disorders” . This day is aimed towards anyone who works with individuals with learning and behavioural disorders associated with a genetic condition.

For more information please go to their website:

http://ssbpconference.org/educationalday/index.html

SSBP International Research Conference: Listening to Genetic Disorders

Fiona — Fri, 22 May 2009 13:00:30 +0000

The conference on “Listening to Genetic Disorders:from molecules to management” is being held by the SSBP (Society for the Study of Behavioural Phenotypes) and is being co-hosted by one of the TSA’s Professional Advisers, Dr Petrus De-Vries.

The conference will be held at Corpus Christi College, Cambridge, UK on the 14-16th October 2009 and is aimed at clinicians and professionals from all specialities. For further information please go to their website:

http://www.ssbpconference.org/programme/index.html

Channel 4 TV-Born to be Different-featuring William Davis (TSC)

Fiona — Thu, 23 Apr 2009 09:37:42 +0000

If you missed this Channel 4 television programme “Born to be Different” feauturing William Davis (TSC) and his parents Paula and Nick Davis, it is still possible to view it online. Go to the channel Four website then to catch up. The TSA are hoping to obtain a copy of this series to loan out to members-we will let you know if and when we get hold of one.

The link is http://www.channel4.com/programmes/born-to-be-different/catch-up.

10k and 5k runs - TSA places available

Hilary — Wed, 04 Mar 2009 09:19:16 +0000

The TSA have free places in the following events, please apply to Anne Carter on 0115 9234301 or use the contact form.

Edinburgh 5k run (Holyrood Park) 20 September 09 – 10 TSA places available

Manchester 5k run (Heaton Park) 28 June 09 – 10 TSA places available

British 10k Run (London) 12 July 09 - ALL PLACES TAKEN

Videos & podcasts

Hilary — Mon, 16 Feb 2009 11:00:32 +0000

Videos & podcasts

A number of other websites have posted videos and podcasts that may be of interest to some families and individuals affected by TSC.

Videos

The Genetic Interest Group (GIG) has video clips about living with a genetic condition (an individual with TSC is the first person featured in all the clips).

Living with a genetic condition

The TSAlliance (USA organsation) have produced a video clip showing Infantile Spasms in TSC.

Infantile spasms and TSC

The National Autistic Society has a page of personal stories, thoughts, reflections, short films, articles and lecture transcripts about life on the spectrum from people with autism spectrum disorders.

Autism stories

Podcasts

The National Society for Epilepsy (NSE) podcasts combine real life personal stories with factual information from NSE.

About epilepsy

Contact a Family podcasts include an interview with a mum, giving an honest account of having a son with autism. Others are about education and financial support.

Contact a Family podcasts

This USA site, run by parents and educators, has interviews with parents, therapists, and other experts about the latest trends in working with children on the autism spectrum.

Autism podcast

TSC personal stories

Visit our on-line discussion forum where you can read stories from others living with TSC and make contact with people with similar experiences whether a parent, a person with TSC or a sibling.

online discussion forum

Student fundraising

Hilary — Thu, 12 Feb 2009 10:44:48 +0000

Student fundraising

University Challenge!

Many universities fund-raise for charities through their ‘Karnivals’ and ‘Rags’

Uni students raise a huge amount of money for charities and their local community whilst having a great deal of fun!

Why not tell them about the TSA and our critical need to raise more funds.

The time is now!

Contact Anne Carter for further information.

Brighton conference

Hilary — Tue, 10 Feb 2009 14:43:02 +0000

In September 2008 the Tuberous Sclerosis Association held the TSC International Research Conference at Sussex University in Brighton, UK.

Videos and presentations presented by the Keynote Speakers are now available to view or download.

Autism Information Day, Glasgow, 20 June 2009

Hilary — Sun, 08 Feb 2009 15:53:13 +0000

A free information day in partnership with the National Autistic Society will take place at St Stephens Church, 260 Bath Street, Glasgow from 11am to 4pm. To reserve your place please book in advance.

The programme will include information for parents and carers of children, who have a diagnosis of an ASD, and will include information on your rights/law, accessing support services, and legislation and benefits.

Download the programme and booking form.

Family Fun Day, Center Parcs Sherwood Forest, Notts, 4 October 2009

Hilary — Sun, 01 Feb 2009 00:15:20 +0000

TSA members are invited to join us for a full day out at Center Parcs including a Buffet Tea and Disco in the evening, at a cost of £5 per adult and children go free.

This is a family day out, a chance to have fun and meet other families in the luxurious surrounds of Center Parcs. Mums, dad, brothers and sisters, and grandparents – you are all encouraged to come along and join in the fun. But please book early – this promises to be another popular event so places will be allocated on a first come, first served basis! To book download the document below:

Booking form and programme

MontpelliRom Bike Ride - please support our fundraisers

Hilary — Fri, 23 Jan 2009 10:39:29 +0000

Derek Noble, along with 2 friends, is riding from Montpellier in the south of France to Rome in
mid-May to raise money for the TSA. Visit his fundraising webpage to check out his plans, read about his 15 year old daughter, Hannah, who has TSC and sponsor him at the same time.