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The Fragile X Society Newsletter Feb - Mar 2014

The February to March 2014 Fragile X Society Newsletter (number 74)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular: 

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Full Programme, Speaker Biographies, and Registration forms for the Scottish Family Conference in May 2014
  • Family Support News, including Toilet Training
  • Scottish Conference 2013 - Lectures Report 
  • Research Updates, including news of the Fragile X International Caregiver Burden "Online" Survey 
  • Fundraising News & Useful Contacts Information 

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

 

If you would like a paper copy of the newsletter then I shall be pleased to send one to you - please get in touch with me by email (sumati@fragilex.org.uk) or by phone (01371  875100).   

We welcome feedback about newsletter contents from our readers.

Please feel free to contact me with your comments by email (sumati@fragilex.org.uk),

or by phone (01371 8751000).

Sumati Saxton, Newsletter Editor, The Fragile X Society

email: sumati@fragilex.org.uk

Tel: 01371 875100

DISCLAIMER:

Please note that the views expressed in our Family Stories or Member quotes are those held by the author and do not necessarily represent those of The Fragile X Society.

We have taken care to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites. 

********************************************************************************

Film Mission to Lars   

 

May 2013: Kate Spicer: Meeting Lars Ulrich helped my brother live a more independent life.

The full low-down on the experience of  Kate Spicer and her brothers  that led to them making this trip-of-a-lifetime is given in this METRO article -  http://metro.co.uk/2013/05/08/kate-spicer-meeting-lars-ulrich-helped-my-fragile-x-brother-live-a-more-independent-life-3715060/

More information about this film

Please note that all the following information below has been taken from the MenCap website www.mencap.org.uk.

A film about brothers and sisters - In the film Mission to Lars we meet Tom Spicer who has Fragile X syndrome, and who has a dream to meet his hero - Lars Ulrich - the drummer with heavy metal Metallica. He had asked for years. Finally his siblings realised they needed to offer him the help he needed to fulfill his wish.

The critically acclaimed feature documentary, Mission to Lars, is the funny and moving story of these two hapless siblings' attempts to make their brother's dream come true. The film is directed by Will Spicer, Tom's brother. Their sister Kate Spicer is in the film alongside Tom and raised the money to get the film made.

Mission to Lars is a heart-warming insight into family relationships and learning disability, which explores the role - good, bad and comical - that siblings play in each other’s lives.

Mission to Lars on DVD

Mission to Lars is available on DVD, Blu-ray and Video on Demand through Clearvision . It is possible to buy a copy on the Amazon website. Proceeds from the DVD and Blu-ray sales will go to Mencap, helping them to support people with a learning disability and their families.

Mission Mencap
Tom wanted to meet his hero, Lars Ulrich. The Spicer family believe that people with a learning disability should be able to live a life without limits; but sometimes people need a bit of help. Mencap will be working with the Spicers to develop Mission Mencap, an initiative that aims to help more people with a learning disability to have more adventures - big and small.


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 What's else is New?

 The rest of this page gives further details about the 'What's New?' items listed above.


 

 

 Research news

See the Research News and News Room pages for news items related to fragile X.

*************************************************************************************

Society News    

Chelmsford Family Support Group Meetings

The  family support group meeting for parents and carers of children and adults with fragile X are normally held on the first Monday of every month, in Chelmsford, Essex. 

Unfortunately the event can be attended by adults only, as the venue is not suitable for children. If you would like to, and are able to attend, we will be pleased to welcome you. Please Contact Us for more details.

If you are interested in setting up a support group in your area then please contact Wendy Bowler on 01371 875100, or at wendy@fragilex.org.uk

Fragile X Merchandise

We are pleased to offer items for sale which help our families to raise awareness of fragile X, as we are certain that a greater awreness of fragile X amongst the general public would make life easier for our families. Furthermore, items such as the Fragile X Polo Shirt, Fragile X Awareness Cards, and our Christmas cards are also useful when undertaking fundraising activities for the Society; as these help to keep our funds going so that we can contine to support our families.

Free Books - Gift books for members who have children with fragile X 

As those of you who receive our newsletters will remember , an article from our Winter Newsletter describe how it was the dearest wish of the family of Mrs Doris Stinson, a well-loved mother and grandmother, that she be remembered with a gift of books for children with fragile X.

In order to make best use of this wonderful donation in memory of Mrs. Stinson, six books were selected by the Society with the help of some of our parents, who were all very willing to share their experiences of reading with and to their children. The key criteria for selection were that the chosen titles should appeal to fragile X children across the whole age range and that there should be choice enough for both boys and girls. 

1. Dear Zoo – a board book
2. Hungry Caterpillar – a board book
3. Peace at Last
4. Whatever Next?
5. The Gruffalo
6. The Three Little Pigs – a Ladybird Read it Yourself book

If you would like to receive a book then all you need to do is to Contact Us with your request. We are offering ONE BOOK per family. The Society shall operate this offer until the books have all been given away.

On behalf of all our families we would like to thank Jill Geddes and her family for offering this very worthwhile and beneficial service to our members.     

 

   join us on Facebook   follow us on twitter    

Share your news, views, and reviews with other members in the Society's Secure Members Only Forum : If you are a member of the Society and:

  • Have already registered with us, you can access the Members' Only Forum

  • If you have not registered, then you can do so by emailing us

  • Not a member? Then why not join? (Please note : Qualification rules apply)

    

 

Which item would you like to explore?

**********************************************************************************

The Fragile X Society Newsletter Feb - Mar 2014

The February to March 2014 Fragile X Society Newsletter (number 74)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular: 

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Full Programme, Speaker Biographies, and Registration forms for the Scottish Family Conference in May 2014
  • Family Support News, including Toilet Training
  • Scottish Conference 2013 - Lectures Report 
  • Research Updates, including news of the Fragile X International Caregiver Burden "Online" Survey 
  • Fundraising News & Useful Contacts Information 

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

 

If you would like a paper copy of the newsletter then I shall be pleased to send one to you - please get in touch with me by email (sumati@fragilex.org.uk) or by phone (01371  875100).   

We welcome feedback about newsletter contents from our readers.

Please feel free to contact me with your comments by email (sumati@fragilex.org.uk),

or by phone (01371 8751000).

Sumati Saxton, Newsletter Editor, The Fragile X Society

email: sumati@fragilex.org.uk

Tel: 01371 875100

DISCLAIMER:

Please note that the views expressed in our Family Stories or Member quotes are those held by the author and do not necessarily represent those of The Fragile X Society.

We have taken care to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites. 

********************************************************************************

Film Mission to Lars   

 

May 2013: Kate Spicer: Meeting Lars Ulrich helped my brother live a more independent life.

The full low-down on the experience of  Kate Spicer and her brothers  that led to them making this trip-of-a-lifetime is given in this METRO article -  http://metro.co.uk/2013/05/08/kate-spicer-meeting-lars-ulrich-helped-my-fragile-x-brother-live-a-more-independent-life-3715060/

More information about this film

Please note that all the following information below has been taken from the MenCap website www.mencap.org.uk.

A film about brothers and sisters - In the film Mission to Lars we meet Tom Spicer who has Fragile X syndrome, and who has a dream to meet his hero - Lars Ulrich - the drummer with heavy metal Metallica. He had asked for years. Finally his siblings realised they needed to offer him the help he needed to fulfill his wish.

The critically acclaimed feature documentary, Mission to Lars, is the funny and moving story of these two hapless siblings' attempts to make their brother's dream come true. The film is directed by Will Spicer, Tom's brother. Their sister Kate Spicer is in the film alongside Tom and raised the money to get the film made.

Mission to Lars is a heart-warming insight into family relationships and learning disability, which explores the role - good, bad and comical - that siblings play in each other’s lives.

Mission to Lars on DVD

Mission to Lars is available on DVD, Blu-ray and Video on Demand through Clearvision . It is possible to buy a copy on the Amazon website. Proceeds from the DVD and Blu-ray sales will go to Mencap, helping them to support people with a learning disability and their families.

Mission Mencap
Tom wanted to meet his hero, Lars Ulrich. The Spicer family believe that people with a learning disability should be able to live a life without limits; but sometimes people need a bit of help. Mencap will be working with the Spicers to develop Mission Mencap, an initiative that aims to help more people with a learning disability to have more adventures - big and small.


********************************************************************************************

 What's else is New?

 The rest of this page gives further details about the 'What's New?' items listed above.


 

 

 Research news

See the Research News and News Room pages for news items related to fragile X.

*************************************************************************************

Society News    

Chelmsford Family Support Group Meetings

The  family support group meeting for parents and carers of children and adults with fragile X are normally held on the first Monday of every month, in Chelmsford, Essex. 

Unfortunately the event can be attended by adults only, as the venue is not suitable for children. If you would like to, and are able to attend, we will be pleased to welcome you. Please Contact Us for more details.

If you are interested in setting up a support group in your area then please contact Wendy Bowler on 01371 875100, or at wendy@fragilex.org.uk

Fragile X Merchandise

We are pleased to offer items for sale which help our families to raise awareness of fragile X, as we are certain that a greater awreness of fragile X amongst the general public would make life easier for our families. Furthermore, items such as the Fragile X Polo Shirt, Fragile X Awareness Cards, and our Christmas cards are also useful when undertaking fundraising activities for the Society; as these help to keep our funds going so that we can contine to support our families.

Free Books - Gift books for members who have children with fragile X 

As those of you who receive our newsletters will remember , an article from our Winter Newsletter describe how it was the dearest wish of the family of Mrs Doris Stinson, a well-loved mother and grandmother, that she be remembered with a gift of books for children with fragile X.

In order to make best use of this wonderful donation in memory of Mrs. Stinson, six books were selected by the Society with the help of some of our parents, who were all very willing to share their experiences of reading with and to their children. The key criteria for selection were that the chosen titles should appeal to fragile X children across the whole age range and that there should be choice enough for both boys and girls. 

1. Dear Zoo – a board book
2. Hungry Caterpillar – a board book
3. Peace at Last
4. Whatever Next?
5. The Gruffalo
6. The Three Little Pigs – a Ladybird Read it Yourself book

If you would like to receive a book then all you need to do is to Contact Us with your request. We are offering ONE BOOK per family. The Society shall operate this offer until the books have all been given away.

On behalf of all our families we would like to thank Jill Geddes and her family for offering this very worthwhile and beneficial service to our members.     

 

   join us on Facebook   follow us on twitter    

Share your news, views, and reviews with other members in the Society's Secure Members Only Forum : If you are a member of the Society and:

  • Have already registered with us, you can access the Members' Only Forum

  • If you have not registered, then you can do so by emailing us

  • Not a member? Then why not join? (Please note : Qualification rules apply)

    

 

 

 

 

 

 

 

 

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA
DISCLAIMER:
Great care has been taken in the compilation and preparation of this site to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.

By using this site, you agree we can set and use cookies. For more details of these cookies and how to disable them, see our Cookie Policy.