The Society is pleased to announce the dates for our 2010 Fragile X Family Conferences as shown below.
Creche Facilities at our conferences
In order to ensure that parents and carers are able to focus on the knowledge and information being presented at our conferences without worrying about their children, the creche facilities we provide at both our Scottish and Birmingham conferences are second to none. Staffed by a professionally qualified and caring team, they are hugely popular with our families; so much so that the available places get booked very quickly after our families receive their conference invitation documents.
The Fragile X Society - Scottish Family Conference
Saturday 8th May 2010 at the Stirling Management Centre, Stirling, Scotland
The Conference Programme can be viewed here.
The Fragile X Society - AGM and Family Conference
Saturday 19 June 2010 at The Holiday Inn, Birmingham, England
The various learning differences and behavioural tendencies of children and adults with Fragile X Syndrome often place thier families, teachers and other professional personnel into challenging situations.
In order to assist and inform everyone who interacts with individuals who have fragile X, we are delighted to announce that our speaker for this conference will be Dr. Marcia Braden (Colorado Springs, USA), who is one of the few experts worldwide in the area of school education and support for children with Fragile X.
As in previous years, we plan to have creche facilities for children up to the age of 10, so that their parents can get the most from Dr Braden's presentations.
The Conference Programme can be viewd here. You may also wish to read the report below of the hugely successful conference held in Germany last year when Dr Marcia Braden was invited to speak by the German Fragile X Society, Interessengemeinschaft Fragiles-X.
English language conference in Germany, with Dr. Marcia Braden -September 26 2009
Marcia delivers Jorge’s Dream
Extracts from a report by Family Member Stewart Dewar.
Following many months of planning and organising by the German FX Society, Marcia Braden delivered her new “Teach the Teacher” lecture, much to the delight of everyone and in particular Jorge who is the Chair of Interessengemeinschaft Fragiles-X. They had worked so hard to make this dream come true – to increase awareness, knowledge and understanding of fragile X, especially in the professional community.
Overwhelmingly, more than three hundred delegates gathered to learn from probably the World’s leading authority on how best to educate those with fragile X. A huge effort had been made to encourage professionals from all areas of fragile X to attend. Together with parents and family members, they listened and watched intently as Marcia guided them through her presentation and video clips on how best to approach and support those with the condition.
We found out about the sort of things that are specific to fragile X, the things that interfere with their ability to attend, the things that will cause distress and anxiety along with effective interventions and strategies.
Marcia was professional and most informative yet still very easy to listen to and understand. She spoke clearly and plainly, was very positive and optimistic, yet realistic, suggesting strategies that would result in a huge improvement for all concerned and allow those with fragile X to maximise their true potential and happiness. Marcia is always a warm and an accomplished speaker and she was at her inspiring best.
I would like to thank the members of the Interessengemeinschaft Fragiles-X, Germany and in particular Jorge and his wife Anke for their very kind hospitality and making this trip an unforgettable and most worthwhile experience.
I know that my wife Nerina has always shared Jorge’s dream of increasing awareness, knowledge and understanding throughout the professionals` community. Our UK Fragile X conferences for professionals and members, held in Birmingham on the 18th and 19th September 2009, were also great successes. I would like to think that when we are better placed financially, we too will see the likes of Marcia and her American colleagues again, over here.
RESULTS OF THE FEEDBACK QUESTIONNAIRE: National Family Conference: Saturday 4th October 2008
Did the conference live up to your expectations?
Yes, with the following additional comments being made:
- Excellent; Very informative; It is the first conference I have attended;
- Over and above, very interesting and informative;
- It actually exceeded my expectations. The tone was very positive as we looked at ways to deal with issues. I really appreciated the scientific approach as it helped to explain a lot;
- Exceeded them- fantastic day; It was just as I expected;
- Very good; As usual an excellent and interesting day with thought provoking talks;
- Excellent conference; Very informative and concise;
- It was the first conference I’ve attended and it was over and above what I expected;
- Exceeded them; Very much so. More positive than most of them;
- More than; Yes and no! Well organised with interesting and knowledgeable speakers.
Did you find Dr Mary Porteous’ talk on “The importance of Genetic Counselling for families and Implications for Carriers and their Reproductive Choices.” interesting?
Yes, with the following additional comments being made:
- Very interesting, good speaker and down to earth;
- An excellent insight particularly given our own situation;
- Good to hear and see the genetics again;
- A very approachable person who was open and honest about her concerns regarding advice given in the past 15-20 years and short comings;
- Very interesting. Her progression of ideas was very logical and she was very open to questions. I appreciated her anecdotes and sense of humour;
- Very interesting, a very good speaker;
- Very interesting. Also after hearing the family experience with Mary as a genetic counsellor she sounds very sensitive and thorough in her approach;
- Really interesting- understood the role much more, helped make sense of our experience;
- Although nothing I didn’t know I’m sure it’s useful for many people;
- Very clear and informative; Even though I have heard the causes many times before I did find this interesting;
- Lovely to have this talk in accessible “layman’s” terms, very interesting;
- It was a new approach to looking at the line of genetics;
- Very interesting; Very good; Yes extremely relevant; Informative;
- Very helpful, covered all my major concerns about needing “counselling”;
- A good start to summarise the condition to the unfamiliar;
- Very; very much so; Very good- learnt a lot more about things I thought I knew;
- Excellent speaker, pitched just right;
- Very accessible;
- Listening to Dr Porteous and having the opportunity to meet and talk to her was the highlight of the event for me, and made the trip/expense worthwhile.
- Yes extremely and easy to understand.
Did you find Nerina Dewar’s overview of her experiences of International Conferences interesting? Were you able to watch the DVD, how did you find it?
Yes, with the following additional comments being made:
- It is so interesting to hear about other countries;
- Interesting to get a bit of an insight into areas such as research;
- Good to know about international network of support. Very good DVD;
- Very important to hear what is going on in other countries. Excellent with helpful practical advice;
- I also found this very useful- exchange of ideas can only be a good thing. I thought she offered a lot of practical tips and seemed very well organised in her sharing of knowledge;
- DVD - yes, very interesting but very sad in parts. Very well presented;
- DVD was fantastic;
- Made me want to go;
- I liked her travel tips; A good insight, hopefully we will be able to attend 2010 conference;
- Very interesting – I think it is important to have a “live” connection at conferences which interfaces with what’s happening internationally re FX;
- Interesting to find out about the conference- perhaps something to consider in the future;
- Superb – very informative;
- Good background information;
- Interesting to have international dimension and family member’s experience and tips on air travel helpful!;
- Presentation very good – I’m going to the next one!
- Is there any way that families going to international conferences in future could meet and travel together or meet there?;
- Really helpful. Booklets/info very interesting; It demonstrated that the USA is ahead of us in so many ways.
Did you find Alison Lashwood’s talk on “Pre-implantation Genetic Diagnosis and fragile X syndrome.” interesting?
Yes, with the following additional comments being made:
- We will be able to let family members know that there are options;
- Very detailed and answered many questions;
- Very; Truly excellent – she was extremely knowledgeable open and very frank in her delivery of information. She represented Guys extremely well;
- Although very difficult to listen to personally as I was affected by ovarian failure;
- Exciting opportunities for our daughters choices;
- Going to be starting PGD soon;
- Extremely interesting. It’s good to know there are options;
- Again didn’t think I would but it was;
- Very interesting. Her talk was very well presented and gave clarity to the issues;
- A frank and honest account of the process of PGD and PGH;
- How well science has come along;
- We live in an area that doesn’t fund IVF. I wonder if they would fund PGD if they consider it a cost saving against the care of a disabled child?;
- The talk answered all our questions;
- Very impressed with sensitive way she obviously deals with this emotive subject;
- She was very honest in her advice about seeking her treatment;
- This was particularly interesting and what I was looking forward to hearing most;
- Very informative and reassuring, the reason I attended, and answered all the questions I needed answering;
- Found it very useful; Really insightful and informative;
- Excellent speaker;
- ACE!;
- Superb – great presenter; Very informative- an area I knew nothing about before the conference. Difficult subject clearly and simply explained. A good presentation.
Did you find Dr Anna Murray’s talk on “Premature Ovarian Failure and early menopause in fragile X carriers.” interesting?
Yes, with the following additional comments being made:
- Quite technical;
- Although it was rather too technical, the slides were not immediately clear to understand;
- Again another excellent presentation. Gave me a lot to think about in terms of family planning etc. Great visuals;
- Hugely, although difficult to digest under the circumstances!;
- Very interested in this subject;
- This is a concern for all pre-menopausal carriers;
- Once again very clear;
- A bit “geneticky”! Would like to have heard more about how to cope;
- Very interesting as someone who has POF explained the statistics and expectations;
- Went through the menopause by 40 – with 97 repeats that seems to put me correctly on her graph;
- Highlighted how much is still unknown;
- Some really useful new information;
- She answered many questions I had and was unable to find detailed info on elsewhere;
- Quite reassuring as well;
- Very good- even I was able to follow it;
- Very good and learnt loads on the topic;
- Superb, made the conference very interesting for me;
- Very- she was excellent and informative;
- Probably more like conferences I am used to attending- so I thought she presented a difficult/sensitive and tricky subject well.
Did you find Liz Henderson’s talk “Reproductive choices, a family experience.” interesting?
Yes, with the following additional comments being made:
- Very interesting to hear a personal perspective;
- Very emotional;
- Always very good to know other people’s experiences;
- Very Good. Highlighted the peaks and troughs of the emotional roller coaster;
- Very emotional – really powerful; she inspired many in the audience;
- Excellent. Good to have a personal experience presented after the professional presentations;
- Very informative (and funny!) nice to hear an honest but encouraging account;
- The most interesting conference speech ever – we all really need to share our experiences;
- Interesting and emotional;
- A family experience is always very moving and grounds everyone;
- Best talk of the day! Thanks to Liz for being so candid about a subject that is very relevant to us at the moment;
- It was very good and gave an emotional insight into reproductive choices;
- Very moving – best one ever! More like it please;
- Excellent. The relevance of the previous speakers was put into perspective so well. The emotions behind the choices available were highlighted and out into context so well. Best wishes to Liz and her wonderful family;
- Highly relevant especially experience of CVS; We would also like to have an unaffected sibling for our no FX daughter and her explanation of the CVS experience is very helpful;
- This gave me more confidence in CVS when before I wouldn’t have considered it;
- A brilliant insight into the CVS procedure at a family level;
- A truly inspiring talk; Really compelling on a hard hitting subject, which was dealt with perfectly. Good way to end the day;
- Very good presentation, entertaining video;
- Liz provided a professionally framed personal view, very intimate and poignant. I’m sure it was deeply appreciated by all who heard it;
- Very brave and inspirational;
- Fantastic- huge thank you;
- She raised some good points and left myself and my wife with much to think about.
Is there a subject you would like us to address at our next conference in Birmingham?
- More family experiences;
- Experiences of a child as he grows up, develops as a teenager and young adult;
- Education help with programmes that are successful;
- Choices in education (early and later years) and further education;
- FXTAS and the advances being made;
- Need more research into how fragile X affects carriers and it really does in our family! – not clear cut;
- More family experiences;
- Speech interventions and therapy for young children with FXS;
- Females with fragile X syndrome and their difficulties and female carriers. There does not seem to be enough information on females and tests on females;
- Someone from Education to talk about SEN policy and implementation;
- Adult issues, care facilities, leaving home problems;
- Experiences of independent living;
- The sensory issues that FX people deal with and how to address and inform others about this important consideration e.g. sensory integration therapy and access to this;
- More of the same is great!;
- Any non American- perhaps latest European research;
- Challenging behaviour.
- Occupations for post 19 year olds.
The Society is pleased to announce the dates for our 2010 Fragile X Family Conferences as shown below.
Creche Facilities at our conferences
In order to ensure that parents and carers are able to focus on the knowledge and information being presented at our conferences without worrying about their children, the creche facilities we provide at both our Scottish and Birmingham conferences are second to none. Staffed by a professionally qualified and caring team, they are hugely popular with our families; so much so that the available places get booked very quickly after our families receive their conference invitation documents.
The Fragile X Society - Scottish Family Conference
Saturday 8th May 2010 at the Stirling Management Centre, Stirling, Scotland
The Conference Programme can be viewed here.
The Fragile X Society - AGM and Family Conference
Saturday 19 June 2010 at The Holiday Inn, Birmingham, England
The various learning differences and behavioural tendencies of children and adults with Fragile X Syndrome often place thier families, teachers and other professional personnel into challenging situations.
In order to assist and inform everyone who interacts with individuals who have fragile X, we are delighted to announce that our speaker for this conference will be Dr. Marcia Braden (Colorado Springs, USA), who is one of the few experts worldwide in the area of school education and support for children with Fragile X.
As in previous years, we plan to have creche facilities for children up to the age of 10, so that their parents can get the most from Dr Braden's presentations.
The Conference Programme can be viewd here. You may also wish to read the report below of the hugely successful conference held in Germany last year when Dr Marcia Braden was invited to speak by the German Fragile X Society, Interessengemeinschaft Fragiles-X.
English language conference in Germany, with Dr. Marcia Braden -September 26 2009
Marcia delivers Jorge’s Dream
Extracts from a report by Family Member Stewart Dewar.
Following many months of planning and organising by the German FX Society, Marcia Braden delivered her new “Teach the Teacher” lecture, much to the delight of everyone and in particular Jorge who is the Chair of Interessengemeinschaft Fragiles-X. They had worked so hard to make this dream come true – to increase awareness, knowledge and understanding of fragile X, especially in the professional community.
Overwhelmingly, more than three hundred delegates gathered to learn from probably the World’s leading authority on how best to educate those with fragile X. A huge effort had been made to encourage professionals from all areas of fragile X to attend. Together with parents and family members, they listened and watched intently as Marcia guided them through her presentation and video clips on how best to approach and support those with the condition.
We found out about the sort of things that are specific to fragile X, the things that interfere with their ability to attend, the things that will cause distress and anxiety along with effective interventions and strategies.
Marcia was professional and most informative yet still very easy to listen to and understand. She spoke clearly and plainly, was very positive and optimistic, yet realistic, suggesting strategies that would result in a huge improvement for all concerned and allow those with fragile X to maximise their true potential and happiness. Marcia is always a warm and an accomplished speaker and she was at her inspiring best.
I would like to thank the members of the Interessengemeinschaft Fragiles-X, Germany and in particular Jorge and his wife Anke for their very kind hospitality and making this trip an unforgettable and most worthwhile experience.
I know that my wife Nerina has always shared Jorge’s dream of increasing awareness, knowledge and understanding throughout the professionals` community. Our UK Fragile X conferences for professionals and members, held in Birmingham on the 18th and 19th September 2009, were also great successes. I would like to think that when we are better placed financially, we too will see the likes of Marcia and her American colleagues again, over here.
RESULTS OF THE FEEDBACK QUESTIONNAIRE: National Family Conference: Saturday 4th October 2008
Did the conference live up to your expectations?
Yes, with the following additional comments being made:
- Excellent; Very informative; It is the first conference I have attended;
- Over and above, very interesting and informative;
- It actually exceeded my expectations. The tone was very positive as we looked at ways to deal with issues. I really appreciated the scientific approach as it helped to explain a lot;
- Exceeded them- fantastic day; It was just as I expected;
- Very good; As usual an excellent and interesting day with thought provoking talks;
- Excellent conference; Very informative and concise;
- It was the first conference I’ve attended and it was over and above what I expected;
- Exceeded them; Very much so. More positive than most of them;
- More than; Yes and no! Well organised with interesting and knowledgeable speakers.
Did you find Dr Mary Porteous’ talk on “The importance of Genetic Counselling for families and Implications for Carriers and their Reproductive Choices.” interesting?
Yes, with the following additional comments being made:
- Very interesting, good speaker and down to earth;
- An excellent insight particularly given our own situation;
- Good to hear and see the genetics again;
- A very approachable person who was open and honest about her concerns regarding advice given in the past 15-20 years and short comings;
- Very interesting. Her progression of ideas was very logical and she was very open to questions. I appreciated her anecdotes and sense of humour;
- Very interesting, a very good speaker;
- Very interesting. Also after hearing the family experience with Mary as a genetic counsellor she sounds very sensitive and thorough in her approach;
- Really interesting- understood the role much more, helped make sense of our experience;
- Although nothing I didn’t know I’m sure it’s useful for many people;
- Very clear and informative; Even though I have heard the causes many times before I did find this interesting;
- Lovely to have this talk in accessible “layman’s” terms, very interesting;
- It was a new approach to looking at the line of genetics;
- Very interesting; Very good; Yes extremely relevant; Informative;
- Very helpful, covered all my major concerns about needing “counselling”;
- A good start to summarise the condition to the unfamiliar;
- Very; very much so; Very good- learnt a lot more about things I thought I knew;
- Excellent speaker, pitched just right;
- Very accessible;
- Listening to Dr Porteous and having the opportunity to meet and talk to her was the highlight of the event for me, and made the trip/expense worthwhile.
- Yes extremely and easy to understand.
Did you find Nerina Dewar’s overview of her experiences of International Conferences interesting? Were you able to watch the DVD, how did you find it?
Yes, with the following additional comments being made:
- It is so interesting to hear about other countries;
- Interesting to get a bit of an insight into areas such as research;
- Good to know about international network of support. Very good DVD;
- Very important to hear what is going on in other countries. Excellent with helpful practical advice;
- I also found this very useful- exchange of ideas can only be a good thing. I thought she offered a lot of practical tips and seemed very well organised in her sharing of knowledge;
- DVD - yes, very interesting but very sad in parts. Very well presented;
- DVD was fantastic;
- Made me want to go;
- I liked her travel tips; A good insight, hopefully we will be able to attend 2010 conference;
- Very interesting – I think it is important to have a “live” connection at conferences which interfaces with what’s happening internationally re FX;
- Interesting to find out about the conference- perhaps something to consider in the future;
- Superb – very informative;
- Good background information;
- Interesting to have international dimension and family member’s experience and tips on air travel helpful!;
- Presentation very good – I’m going to the next one!
- Is there any way that families going to international conferences in future could meet and travel together or meet there?;
- Really helpful. Booklets/info very interesting; It demonstrated that the USA is ahead of us in so many ways.
Did you find Alison Lashwood’s talk on “Pre-implantation Genetic Diagnosis and fragile X syndrome.” interesting?
Yes, with the following additional comments being made:
- We will be able to let family members know that there are options;
- Very detailed and answered many questions;
- Very; Truly excellent – she was extremely knowledgeable open and very frank in her delivery of information. She represented Guys extremely well;
- Although very difficult to listen to personally as I was affected by ovarian failure;
- Exciting opportunities for our daughters choices;
- Going to be starting PGD soon;
- Extremely interesting. It’s good to know there are options;
- Again didn’t think I would but it was;
- Very interesting. Her talk was very well presented and gave clarity to the issues;
- A frank and honest account of the process of PGD and PGH;
- How well science has come along;
- We live in an area that doesn’t fund IVF. I wonder if they would fund PGD if they consider it a cost saving against the care of a disabled child?;
- The talk answered all our questions;
- Very impressed with sensitive way she obviously deals with this emotive subject;
- She was very honest in her advice about seeking her treatment;
- This was particularly interesting and what I was looking forward to hearing most;
- Very informative and reassuring, the reason I attended, and answered all the questions I needed answering;
- Found it very useful; Really insightful and informative;
- Excellent speaker;
- ACE!;
- Superb – great presenter; Very informative- an area I knew nothing about before the conference. Difficult subject clearly and simply explained. A good presentation.
Did you find Dr Anna Murray’s talk on “Premature Ovarian Failure and early menopause in fragile X carriers.” interesting?
Yes, with the following additional comments being made:
- Quite technical;
- Although it was rather too technical, the slides were not immediately clear to understand;
- Again another excellent presentation. Gave me a lot to think about in terms of family planning etc. Great visuals;
- Hugely, although difficult to digest under the circumstances!;
- Very interested in this subject;
- This is a concern for all pre-menopausal carriers;
- Once again very clear;
- A bit “geneticky”! Would like to have heard more about how to cope;
- Very interesting as someone who has POF explained the statistics and expectations;
- Went through the menopause by 40 – with 97 repeats that seems to put me correctly on her graph;
- Highlighted how much is still unknown;
- Some really useful new information;
- She answered many questions I had and was unable to find detailed info on elsewhere;
- Quite reassuring as well;
- Very good- even I was able to follow it;
- Very good and learnt loads on the topic;
- Superb, made the conference very interesting for me;
- Very- she was excellent and informative;
- Probably more like conferences I am used to attending- so I thought she presented a difficult/sensitive and tricky subject well.
Did you find Liz Henderson’s talk “Reproductive choices, a family experience.” interesting?
Yes, with the following additional comments being made:
- Very interesting to hear a personal perspective;
- Very emotional;
- Always very good to know other people’s experiences;
- Very Good. Highlighted the peaks and troughs of the emotional roller coaster;
- Very emotional – really powerful; she inspired many in the audience;
- Excellent. Good to have a personal experience presented after the professional presentations;
- Very informative (and funny!) nice to hear an honest but encouraging account;
- The most interesting conference speech ever – we all really need to share our experiences;
- Interesting and emotional;
- A family experience is always very moving and grounds everyone;
- Best talk of the day! Thanks to Liz for being so candid about a subject that is very relevant to us at the moment;
- It was very good and gave an emotional insight into reproductive choices;
- Very moving – best one ever! More like it please;
- Excellent. The relevance of the previous speakers was put into perspective so well. The emotions behind the choices available were highlighted and out into context so well. Best wishes to Liz and her wonderful family;
- Highly relevant especially experience of CVS; We would also like to have an unaffected sibling for our no FX daughter and her explanation of the CVS experience is very helpful;
- This gave me more confidence in CVS when before I wouldn’t have considered it;
- A brilliant insight into the CVS procedure at a family level;
- A truly inspiring talk; Really compelling on a hard hitting subject, which was dealt with perfectly. Good way to end the day;
- Very good presentation, entertaining video;
- Liz provided a professionally framed personal view, very intimate and poignant. I’m sure it was deeply appreciated by all who heard it;
- Very brave and inspirational;
- Fantastic- huge thank you;
- She raised some good points and left myself and my wife with much to think about.
Is there a subject you would like us to address at our next conference in Birmingham?
- More family experiences;
- Experiences of a child as he grows up, develops as a teenager and young adult;
- Education help with programmes that are successful;
- Choices in education (early and later years) and further education;
- FXTAS and the advances being made;
- Need more research into how fragile X affects carriers and it really does in our family! – not clear cut;
- More family experiences;
- Speech interventions and therapy for young children with FXS;
- Females with fragile X syndrome and their difficulties and female carriers. There does not seem to be enough information on females and tests on females;
- Someone from Education to talk about SEN policy and implementation;
- Adult issues, care facilities, leaving home problems;
- Experiences of independent living;
- The sensory issues that FX people deal with and how to address and inform others about this important consideration e.g. sensory integration therapy and access to this;
- More of the same is great!;
- Any non American- perhaps latest European research;
- Challenging behaviour.
- Occupations for post 19 year olds.