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> Contact a Family June e-newsletter
>
> ++Contents.
>
> +01: Contact a Family Directory 2009 - Out now.
>
> +02: Attitudes towards disability shocking say UK families with
> disabled children.
>
> +03: Contact a Family premieres new films.
>
> +04: New ways to get in touch on MakingContact.org .
>
> +05: Job vacancies at Contact a Family.
>
> +06: Simpler rules on backdating extra tax credit payments.
>
> +07: Increase in Family Fund age limits.
>
> +08: Need help to pay for essential items?
>
> +09: Parents of disabled children rate delivery of the 'core offer'.
>
> +10: Budget boost for disabled children and their families.
>
> +11: Disabled children and short breaks interim report published.
>
> +12: Clarification on the Health Service's Short Breaks money.
>
> +13: New national representative body for special schools.
>
> +14: New heath and social care regulator for England.
>
> +15: KIDS Direct Short Breaks service.
>
> +16: London Zoo's fun day for children with additional needs.
>
> +17: Free holidays for children with life limiting illnesses.
>
> +18: Parents of disabled children included in plans for new savings
> scheme.
>
> +19: �9 million for Northern Ireland to improve community support for
> children with complex needs.
>
> +20: Online advice about equipment for disabled children.
>
> +21: New website for young people with mental health problems.
>
> +22: New sign language advice films (England and Wales).
>
> +23: New website for Every Child Matters.
>
> +24: New guide to help healthcare professionals 'get it right'.
>
> +25: Disabled children and young people - have your say.
>
> +26: Tell the government what you think of the special educational
> needs process.
>
> +27: Giving children and young people a right to appeal statements of
> special educational needs.
>
> +28: Volunteers needed to help research for genetic counsellors.
>
> +29: New podcast on TAR syndrome.
>
> +30: New podcast on Sturge-Weber syndrome.
>
> +31: New podcast on Bladder Exstrophy.
>
> .
>
> ++Contact a Family news.
>
> +01: CONTACT A FAMILY DIRECTORY 2009 - OUT NOW
>
> 'The Contact a Family Directory' is the UK's leading guide to
> disabilities and health conditions, including rare disorders.
>
> If you work with children or adults affected by disability or
> additional needs, the Contact a Family Directory is a vital resource
> for you and your colleagues.
>
> The Contact a Family Directory is available in paperback for �40, or
> as an annual subscription to an online version for �17.25. Order the
> book now, and you can also get the online subscription at a reduced
> price of only �5, helping you to have all the information at your
> fingertips and the click of a button.
>
> The paperback book also come with a free wallchart (while stocks
> last) detailing benefits, practical help and support available for
> families with disabled children.
>
> To order the Contact a Family Directory, visit Web:
> http://www.cafamily.org.uk/shop.html?scat=8 .
>
> +02: ATTITUDES TOWARDS DISABILITY SHOCKING SAY UK FAMILIES WITH
> DISABLED CHILDREN.
>
> Families with disabled children in the UK feel stigmatised and shut
> out from society, according to new research published by Contact a
> Family.
>
> Contact a Family surveyed 615 families with disabled children about
> their experiences of living in the UK, asking what makes you stronger
> practically, socially and emotionally.
>
> 'What makes my family stronger' found negative attitudes towards
> disability coupled with a lack of services are the main barriers
> preventing families with disabled children from leading ordinary
> lives. While some families show resilience, imagination and great
> strength attempting to overcome these barriers, there are some who
> cannot cope any longer and are at breaking point.
>
> Key findings of the 'What makes my family stronger' report are:
>
> - Almost 70% of families with disabled children said that
> understanding and acceptance of disability from their community or
> society is poor or unsatisfactory.
>
> - Over 60% of families said they don't feel listened to by
> professionals.
>
> - Vital support services such as short breaks, a key worker and
> childcare are unavailable to almost half of families.
>
> - Over 60% of families said they don't feel valued by society in
> their role as carers.
>
> - Half of families with disabled children said the opportunity to
> enjoy play and leisure together is poor or unsatisfactory.
>
> Srabani Sen, Chief Executive of Contact a Family, said: 'It is
> shocking that in the UK today, attitudes towards disabled children,
> from professionals and members of the public are among the barriers
> preventing families from leading ordinary lives. Families with
> disabled children have enough challenges to overcome to secure the
> support they need without also having to cope with prejudice and
> ignorance.'
>
> Contact a Family is calling for:
>
> - The government to invest in a UK-wide campaign to raise awareness
> of the needs of families with disabled children.
>
> - Everyone working in a public facing role in the UK to be given
> disability equality training. And stronger focus on disability
> awareness in schools.
>
> - The much welcomed and significant investment in short breaks
> services in England must be sustained and included in the next
> Spending Review.
>
> - The government to commit to urgently reviewing carers benefits and
> set a clear timetable for reform.
>
> Contact a Family welcomes the government's recent investment in
> services for disabled children and their families, but there is still
> a long way to go before the right support is available to all who need
> them.
>
> Srabani Sen added: 'Families with disabled children want the same
> things as other families. They want to see their children reach their
> full potential, they want to be included and accepted by their
> community and they want to enjoy time together and have fun.
>
> 'For this to happen, professionals need to recognise each child's
> capabilities rather than seeing only disability. They must also
> recognise the value and expertise of parent carers. And every one of
> us needs to be more understanding and accepting of disability.'
>
> Read the report in full at Web: http://www.cafamily.org.uk/wmmfs.pdf
>
> For further information contact: Elaine Bennett, Media Officer, Tel:
> 020 7608 8741/8744, e-mail: elaine.bennett@... .
>
> +03: CONTACT A FAMILY PREMIERES NEW FILMS.
>
> Contact a Family is premiering three new short films about families
> with disabled children.
>
> The web videos feature families talking about their experiences of
> raising a child with a disability and the best sources of support they
> have found.
>
> You can view the films on our YouTube channel at Web:
> http://www.youtube.com/user/cafamily .
>
> +04: NEW WAYS TO GET IN TOUCH ON MAKINGCONTACT.ORG .
>
> Contact a Family's flagship social networking site now has message
> boards to enable families with children with rare conditions across
> the world to share experiences and support each other.
>
> There are over 6,000 parents registered on our on-line service
> MakingContact.org. Parents can make contact with others whose children
> have the same condition in order to gain, and give, support through
> the sharing of experiences and knowledge.
>
> For more information visit Web: http://www.makingcontact.org .
>
> 05: JOB VACANCIES AT CONTACT A FAMILY.
>
> Contact a Family has several job vacancies currently being
> advertised.
>
> Head of Publications and New Media.
>
> - 1 year fixed term contract (with possible extension)
>
> - 35 hours per week
>
> - Salary �37,473 - �40,104 (inclusive of London Weighting), scale
> points 41 to 44.
>
> - Based at City Road, London
>
> - Closing date: 5th June 2009, 5pm
>
> - Interview date: 11th June 2009
>
> Finance Officer
>
> - 35 hours a week
>
> - Salary �22,627 - �24,501, scale 22-25 on NJC Local Government
> Scales.
>
> - Based at City Road, London
>
> - Closing date: 8th June 2009
>
> - Interview date: 12th June 2009
>
> Database Information Researcher
>
> - 1 year fixed term contract
>
> - Salary scale 26-28 �22,001 - 26,739 (dependant on experience and
> location)
>
> - 35 hours - office or home based
>
> - Closing date: 10th June 2009, 5pm
>
> - Interview date: 19th June 2009
>
> Family Worker (part-time)
>
> - Salary scale point 26-28 �22,001 - �23,473
>
> - 17.5 hours per week fixed term contract until December 2011
>
> - Based in Cumbria
>
> - Closing date: 22nd June 2009
>
> - Interview date: 1st July 2009
>
> Family Worker (part-time)
>
> - Salary scale point 26-28 �22,001 - �23,473
>
> - 17.5 hours per week fixed term contract until March 2011
>
> - Based in the West Midlands
>
> - Closing date: 3rd July 2009
>
> - Interview date: 13th July 2009
>
> For more information on these jobs visit Web:
> http://www.cafamily.org.uk/about/jobs.html .
>
> .
>
> ++News stories.
>
> +06: SIMPLER RULES ON BACKDATING EXTRA TAX CREDIT PAYMENTS.
>
> If your child is awarded Disability Living Allowance (DLA) or has an
> existing DLA award increased to the highest rate, this can lead to
> extra child tax credit payments, known as the disability elements.
> Following lobbying by Contact a Family and others, the rules on
> backdating of these payments have been simplified.
>
> Prior to April 2009, any parent who wanted to make sure these
> disability elements were fully backdated had to notify tax credits
> both when they claimed DLA and when they got a DLA award. Many parents
> lost out because they were unaware of the need to tell tax credits
> that a claim was being made. However, since April 2009 the rules have
> been simplified. Now you only need to notify DLA once - when you get
> an award. If you are awarded DLA for your child (or have an existing
> award increased to the high rate for personal care) let tax credits
> know within three months of the DLA decision. So long as you do this,
> any extra tax credit payments will be backdated in line with the DLA
> award.
>
> You can access the new rules in full at Web:
> http://www.opsi.gov.uk/si/si2009/pdf/uksi_20090697_en.pdf
>
> If you have any questions about this or any other benefits issues
> please contact our helpline on Tel: 0808 808 3555.
>
> +07: INCREASE IN FAMILY FUND AGE LIMITS.
>
> Recent changes in the age limits mean that the Family Fund can now
> give grants for severely disabled children aged up to 18 in England,
> Northern Ireland, Scotland and Wales.
>
> To qualify, eligible families must have a gross income of no more
> than �23,000 pa and savings of �18,000 or less (figures current from
> 2008, reviewed periodically). The fund can help families caring for a
> disabled child up to the 18th providing the application is received
> before the young person's 18th birthday.
>
> For information Tel: 01904 550037 or visit Web:
> http://www.familyfund.org.uk/ .
>
> +08: NEED HELP TO PAY FOR ESSENTIAL ITEMS?
>
> Save the Children, in partnership with UK charity Family Action, is
> distributing cash crisis grants to around a thousand families who are
> struggling in the recession.
>
> They aim to deliver �150,000 to those families most in need. The
> money will be given to help people pay for basic essentials. Help is
> for low income families with children up to 18 years old, including
> families with disabled children. It is particularly aimed at people
> living on benefits or who have just lost their jobs.
>
> Grants are available in England, Scotland and Wales. Northern Ireland
> is not covered by the grants because the Executive has made a �150
> one-off household fuel payment to families.
>
> To find out how to apply for a crisis grant please visit Family
> Action at Web: http://www.family-action.org.uk or download an
> application form at Web:
>
http://www.family-action.org.uk/uploads/documents/Families%20in%20Crisis%20Appli\
cation%20Form.pdf
>
>
> +09: PARENTS OF DISABLED CHILDREN RATE DELIVERY OF THE 'CORE OFFER'.
>
> The Office of National Statistics has published an overall
> satisfaction score of parents of disabled children of 59 out of 100
> for delivery of the government's 'core offer' for disabled children.
>
> The 'core offer', introduced through Aiming High for Disabled
> Children, is the commitment from local authorities and Primary Care
> Trusts to disabled children and their parents on how they will be
> informed and involved as their needs are assessed and necessary
> services are delivered.
>
> Aiming High for Disabled Children also introduced a new national
> indicator - NI54 - on services for disabled children. NI54 assesses
> parents' general experience of services for disabled children aged 0
> to 19 and the extent to which services are delivered according to the
> 'core offer'.
>
> To download the DCSF Statistical Release visit Web:
> http://www.dcsf.gov.uk/rsgateway/DB/STR/d000846/index.shtml
>
> +10: BUDGET BOOST FOR DISABLED CHILDREN AND THEIR FAMILIES.
>
> Contact a Family welcomes the significant investment announced in the
> budget to provide additional financial support for disabled children
> and their families through the Child Trust Fund.
>
> The government will pay �100 (�200 for severely disabled children)
> per year into a disabled child's trust fund. Entitlement to these
> payments will be linked to receipt of Disability Living Allowance
> (DLA) and payments will start in April 2010.
>
> +11: DISABLED CHILDREN AND SHORT BREAKS INTERIM REPORT PUBLISHED.
>
> 'Short breaks tracking - an interim report April 2009' has been
> published by campaign group Every Disabled Child Matters (EDCM), of
> which Contact a Family is a founder member.
>
> Between 2008-2011, EDCM will be evaluating the impact of the Aiming
> High for Disabled Children (AHDC) short breaks programme on the lives
> of disabled children and their families.
>
> This three year tracking project will provide evidence to influence
> delivery of short breaks, push for evaluation of AHDC and call for
> sustained investment for disabled children's services from the next
> government spending review.
>
> The interim report highlights examples of good practice and
> identifies areas of concern.
>
> Read the report in full at Web:
> http://www.edcm.org.uk/short_breaks_tracking_interim_april09.pdf .
>
> For more information on the EDCM campaign for short breaks visit Web:
> http://www.edcm.org.uk/shortbreaks .
>
> +12: CLARIFICATION ON THE HEALTH SERVICE'S SHORT BREAKS MONEY.
>
> The government has written to every Primary Care Trusts (PCTs) in
> England setting out the funding position and specific actions required
> from PCTs to improve the lives of disabled children.
>
> The Care Quality Commission has also announced it will carry out a
> special review this year to examine the health and social care for
> families with disabled children and young people.
>
> The government has clarified that 1.23% of the �27,596 million
> additional resources the Department of Health is making to PCTs from
> 2008-2011 is for disabled children's services and has set out priority
> areas that should benefit from this expenditure including short
> breaks, community equipment, wheelchairs and children's palliative
> care.
>
> Read the full letters at Web:
>
http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcollea\
gueletters/DH_097376
> .
>
> +13: NEW NATIONAL REPRESENTATIVE BODY FOR SPECIAL SCHOOLS.
>
> The Department for Education and Skills has provided �150,000 in
> start-up funds to create a national representative body for special
> schools.
>
> The new body is called the 'Federation of Leaders in Special
> Education' (FLSE). It aims 'to shape and deliver SEN policy to ensure
> every child's needs are met'. They welcome all those who are involved
> in the education of children and young people with special educational
> needs.
>
> For more information visit Web: http://www.flse.org.uk/ .
>
> +14: NEW HEATH AND SOCIAL CARE REGULATOR FOR ENGLAND.
>
> The Healthcare Commission, Commission for Social Care Inspection and
> the Mental Health Act Commission have merged to become The Care
> Quality Commission, the new heath and social care regulator for
> England.
>
> Their aim is to look at the joined up picture of health and social
> care and ensure better care for everyone in hospital, in a care home
> and at home. They regulate health for children and adults, and adult
> social care services in England, whether they're provided by the NHS,
> local authorities, private companies or voluntary organisations. They
> also protect the rights of people detained under the Mental Health
> Act.
>
> Part of their work is assessing, checking and reviewing health
> services for children and commissioning a comprehensive child and
> adolescent mental health service. You can contact them if you need
> help finding information about your local NHS Trust
>
> For more information Tel: 03000 616161.
>
> Web: http://www.cqc.org.uk .
>
> +15: KIDS DIRECT SHORT BREAKS SERVICE.
>
> KIDS, a national charity for disabled children and young people have
> received funding from the Department for Children Schools and Families
> (DCSF) to develop a new short breaks service.
>
> 'KIDS Direct Short break' will use internet and text messaging
> technology to link families with disabled children to short break
> workers in their local area who are trained and managed by KIDS.
>
> The service aims to put families in control of their short break so
> they can manage them to fit around family life, and be personalised to
> the interests and aspirations of the child or young person (aged up to
> 25).
>
> From April 2009 funding will be available to all local authorities
> that can demonstrate they are ready to deliver high quality short
> breaks. The service is currently running in Sutton and Hull, and they
> are applying to other local authority areas as they develop their
> short break services.
>
> KIDS would like to hear from parents about how the service would
> support their family and get an idea of the local demand. You can use
> their online form at Web: http://tinyurl.com/cc73oo to register your
> interest and they can notify your local authority and provide them
> with information on Direct Short Breaks and how it could help your
> family.
>
> For more information Tel: 0845 453 1000 or visit Web:
> http://www.directshortbreaks.org.uk .
>
> +16: LONDON ZOO'S FUN DAY FOR CHILDREN WITH ADDITIONAL NEEDS.
>
> Children with disabilities and their families are invited to a London
> Zoo fun day with reduced admission costs on Saturday 13th June.
>
> The day is an annual event put on by London Zoo, enabling families
> with disabled children to enjoy all the zoo has to offer and more at a
> discount price.
>
> Also available on the day will be British Sign Language
> interpretation for all talks and displays, face painting, live band
> and a separate entrance and welcome near the main car park.
>
> Families with disabled children need to pre-book and prepay before
> 6th June to get the reduced rates.
>
> For more details and a booking form, please contact Steve, Tel: 020
> 7449 6551 or e-mail: steve.marriott@...
>
> +17: FREE HOLIDAYS FOR CHILDREN WITH LIFE LIMITING ILLNESSES.
>
> Camp Quality UK is a charity that takes children with a potential
> life limiting illness (including cancer) on holidays, giving them the
> chance to be themselves and to have fun.
>
> The holiday programme is structured to cater for all abilities and
> disabilities and there is a medical team on hand. Every holiday is
> funded entirely by Camp Quality UK and is provided free of charge to
> each child.
>
> For more information visit Web: http://www.campquality.org.uk .
>
> +18: PARENTS OF DISABLED CHILDREN INCLUDED IN PLANS FOR NEW SAVINGS
> SCHEME.
>
> The government has included families with disabled children in their
> plans for a savings scheme called the 'Saving Gateway'.
>
> From 2010 the savings scheme will be open to people of working age on
> low incomes and in receipt of specified benefits, including Carer's
> Allowance. For every pound saved the government will give a
> contribution of 50p. Savers will be able to pay up to �25 a month into
> their account for two years, which means a potential contribution from
> the government of �300 after the two year period.
>
> For more information visit Web:
>
http://www.direct.gov.uk/en/MoneyTaxAndBenefits/ManagingMoney/SavingsAndInvestme\
nts/DG_10010450
> .
>
> +19: �9 MILLION FOR NORTHERN IRELAND TO IMPROVE COMMUNITY SUPPORT FOR
> CHILDREN WITH COMPLEX NEEDS.
>
> Children and young people with complex physical healthcare needs in
> Northern Ireland will be receiving support to live with their family
> due to a �9 million investment over the next three years. The aim is
> to provide care packages appropriate to the needs of each child and
> family, including nursing support, equipment, training and respite
> care (short breaks).
>
> The investment is in addition to a yearly �200,000 for the Children's
> Hospice for outreach services for those with complex physical
> healthcare needs.
>
> Specific yearly funding of �220,000 was also announced recently to
> improve hospital services for children with intractable epilepsy.
>
> For more information visit the Northern Ireland Executive website at
> Web:
>
http://www.northernireland.gov.uk/news/news-dhssps/news-dhssps-community-support\
-for-children020209.htm
>
> .
>
> ++New resources for families.
>
> +20: ONLINE ADVICE ABOUT EQUIPMENT FOR DISABLED CHILDREN.
>
> Disability charity, the Disabled Living Foundation has launched an
> advice and information website on equipment for children and young
> people with disabilities.
>
> The site, Living Made Easy for Children has been created by an
> occupational therapists and aims to bring together information on
> every product for children and young people with disabilities into one
> place.
>
> The site includes a star rating system showing whether suppliers have
> provided prices for the product and whether they have signed up to
> industry Codes of Conduct. Users can review products themselves,
> discuss products with other parents or ask for specific advice from
> occupational therapists.
>
> For more information visit Web:
> http://www.livingmadeeasy.org.uk/children .
>
> +21: NEW WEBSITE FOR YOUNG PEOPLE WITH MENTAL HEALTH PROBLEMS.
>
> YoungMinds have launched a new website 'My head Hurts', a new website
> for young people with mental health problems. It provides information
> to young people diagnosed with anxiety, self harm, conduct disorder,
> depression, ADHD and eating disorders. The idea for the site came from
> young people themselves and they have been central in its creation and
> content.
>
> For more information visit Web:
> http://www.youngminds.org.uk/my-head-hurts .
>
> +22: NEW SIGN LANGUAGE ADVICE FILMS (ENGLAND AND WALES).
>
> Community Legal Advice (CLA) has created a set of films that give
> advice in British Sign Language (BSL) to people who have large debts,
> have been made redundant or are at risk of losing their home. The
> advice is in BSL, but a voiceover has been added.
>
> Titles include: dealing with debt, losing your home, dealing with
> rent problems - if you rent privately, claiming benefits, problems
> with schools and care proceedings.
>
> Watch these films on YouTube at Web:
> http://www.youtube.com/user/communitylegaladvice?gl=GB&hl=en-GB .
>
> .
>
> ++New resources for professionals.
>
> +23: NEW WEBSITE FOR EVERY CHILD MATTERS.
>
> The Department for Children, Schools and Families has re-developed
> the Every Child Matters (ECM) website.
>
> The new site incorporates three former sites: Every Child Matters,
> Local Authorities and Sure Start. It is aimed to be a single channel
> for information aimed at professionals within the children's
> workforce, including information on Aiming High for Disabled Children,
> special educational needs and disability.
>
> Visit the Every Child Matters website at Web:
> http://www.dcsf.gov.uk/everychildmatters .
>
> +24: NEW GUIDE TO HELP HEALTHCARE PROFESSIONALS 'GET IT RIGHT'.
>
> Prominent health organisations, including the Royal College of
> Nursing and the Royal Society of Medicine, have joined forces with
> Mencap to produce a best practice guide for health professionals.
>
> The health bodies, representing over one million health professionals
> in the UK, came together in response to the publication of Mencap's
> 'Death by indifference' report, which exposed the shocking deaths of
> six people with a learning disability, who died unnecessarily in NHS
> care. The guide, 'Getting it right', aims to stop discrimination and
> focuses on improving healthcare for people with a learning disability
> in the NHS. It is accompanied by an interactive website.
>
> Download the report at Web:
> http://www.mencap.org.uk/displaypagedoc.asp?id=6770 .
>
> .
>
> ++Consultations and surveys
>
> +24: Disabled children and young people - have your say.
>
> This summer the Every Disabled Child Matters (EDCM) campaign are
> working with disabled children and young people to develop a disabled
> young people's manifesto.
>
> The aim is to directly influence party policies in the run up to the
> general election and ensure that each party manifesto includes
> commitments for disabled children and their families that have been
> informed by the views of disabled children and young people
> themselves.
>
> EDCM want to hear from disabled children and young people about what
> they want to included in the young people's manifesto.
>
> For more information or to send in answers, photos or pictures visit
> Web: http://www.edcm.org.uk/ypmanifesto or e-mail: pamela@...
>
> Responses need to be in by Friday 26th June 2009.
>
> +26: TELL THE GOVERNMENT WHAT YOU THINK OF THE SPECIAL EDUCATIONAL
> NEEDS PROCESS.
>
> The Lamb Inquiry was set up to advise the Secretary of State on the
> most effective ways of increasing parents confidence in the special
> educational needs (SEN) assessment process.
>
> At the end of April, Brian Lamb submitted the report, 'Lamb Inquiry
> Review of SEN and Disability Information' outlining his
> recommendations and identifying further issues from the evidence so
> far.
>
> Now the Inquiry is very keen to get your views of the SEN system and
> is inviting everyone - parents, children and staff in schools and
> children's services - to answer their online questionnaires.
>
> The call for evidence closes at 10pm on 30th June 2009.
>
> Let the government know about your experiences at Web:
> http://www.dcsf.gov.uk/lambinquiry/evidence.shtml .
>
> To read the Inquiry Review and related documents visit Web:
> http://www.dcsf.gov.uk/lambinquiry/ .
>
> +27: GIVING CHILDREN AND YOUNG PEOPLE A RIGHT TO APPEAL STATEMENTS OF
> SPECIAL EDUCATIONAL NEEDS.
>
> The government are currently running a consultation on giving
> children and young people a right to appeal decisions on exclusions,
> SEN statements and assessments, and to make disability discrimination
> claims in England.
>
> They are seeking the views of children and young people, parents,
> carers, governing bodies, local government, school staff, teaching and
> support staff unions (including professional bodies), tribunal and
> independent appeal panel members, associated representative
> organisations and the voluntary sector.
>
> The consultation ends on Tuesday 28th July 2009.
>
> Take part in the consultation at Web:
>
http://www.dcsf.gov.uk/consultations/index.cfm?action=consultationDetails&consul\
tationId=1607&external=no&menu=1
> .
>
> +28: VOLUNTEERS NEEDED TO HELP RESEARCH FOR GENETIC COUNSELLORS.
>
> The Medical Research Council, in collaboration with The Genetic
> Interest Group, is carrying out research to develop new ways of
> measuring how people with genetic diseases or conditions might benefit
> from seeing a geneticist/genetic counsellor or attending a genetics
> clinic (a place where people can be tested, diagnosed and counselling
> can be offered to help cope with the affects of a diagnosis).
>
> They are looking for people aged 17 years and older from families
> affected by genetic conditions to help with this, by completing an
> early version of their questionnaire. You do not need to have used a
> clinical genetics service yourself to help with this research. There
> has been very little research in this area and this is an opportunity
> for you to help with research that may improve services for affected
> families.
>
> Use PIN number 1144 to access the questionnaire, fill in the consent
> agreement and then complete the questionnaire. You can withdraw from
> it at any point.
>
> To complete the questionnaire online go to Web:
> http://www.geneticsforpatients.org.uk/ .
>
> For a paper copy of the questionnaire please contact: Marion
> McAllister PhD, MRC Research Fellow, Tel: 0161 276 8979, e-mail:
> marion.mcallister@..., Web:
> http://www.nowgen.org.uk/stories/232-dr_marion_mcallister .
>
> .
>
> ++ New podcasts.
>
> +29: NEW PODCAST ON TAR SYNDROME.
>
> Contact a Family has produced a new podcast on TAR syndrome
> (Thrombocytopenia and Absent Radius).
>
> In Thrombocytopenia and Absent Radius there are low platelets and
> absence of the radius on both sides (bilaterally). The radius and the
> ulna are the two bones in the forearm. The radius is the bone that is
> on the side of the forearm where the thumb is. There may be other
> bones involved as well but the unique feature of Thrombocytopenia and
> Absent Radius is that although the radius is absent, the thumb is
> present.
>
> This podcast is a father's experience of having a child with TAR
> syndrome.
>
> Listen to the podcast at Web:
> http://www.cafamily.org.uk/audio/TAR_syndrome_parent_interview.mp3 .
>
> +30: NEW PODCAST ON STURGE-WEBER SYNDROME.
>
> Contact a Family has produced a new podcast on Sturge-Weber syndrome.
>
>
> Sturge-Weber syndrome (SWS) is a congenital disorder involving the
> brain, skin and eyes.
>
> There is a facial birth mark (port wine stain), a layer of blood
> vessels over the covering of the brain (venous angioma of the
> leptomeninges) and there may be an angioma (collections of abnormal
> blood vessels) involving the inner lining of the eye (choroidal
> angioma). The angioma usually involves one side of the brain and
> varies in extent. More rarely it may involve both sides of the brain.
>
> This podcast is a mother's experience of having a child with
> Sturge-Weber syndrome.
>
> Listen to the podcast at Web:
> http://www.cafamily.org.uk/audio/sturge-weber_parent_interview.mp3 .
>
> +31: NEW PODCAST ON BLADDER EXSTROPHY.
>
> Contact a Family has produced a new podcast on Bladder Exstrophy.
>
> The exstrophy epispadias complex is a spectrum of disorders ranging
> in severity from epispadias through bladder exstrophy to cloacal
> exstrophy. All three and their variants are rare congenital
> abnormalities, which affects boys more frequently than girls.
>
> This podcast is a mother's experience of having a child with Bladder
> Exstrophy and Epispadias.
>
> Listen to the podcast at Web:
> http://www.cafamily.org.uk/audio/bladder_exstrophy_parent_interview.mp3
> .
>
> .
>
> .
>
>
>
> ++ Subscription details.
>
> To unsubscribe from this e-Newsletter goto
>
> ?uid=c5c5cb85426277cb7bd61d483e967aeb .
>
> To change your preferences go to
>
>
http://lists.cafamily.org.uk/lists/?p=preferences&uid=c5c5cb85426277cb7bd61d483e\
967aeb
> .
>
> NOTE: those links may have wrapped in your e-mail client, make sure you
> enter the entire URL when browsing
> to the relevant page.
> .
>
> ++ Contact details.
>
> This E-newsletter conforms to the accessible Text Email Newsletter (TEN)
> Standards. For details see Web:
> http://www.headstar.com/ten .
>
> For details of this newsletter please go to Web:
> http://lists.cafamily.org.uk .
>
> Questions about the newsletter should be sent to e-mail:
> mailto:info@... .
>
> Contact a Family is a UK based, registered charity for families with
> disabled children. We offer a helpline (free in the UK) for families,
> Tel: 0808 808 3555. Text: 0808 808 3556. Tel: 020 7608 8700 Admin.
> Websites:
> http://www.cafamily.org.uk .
> http://www.makingcontact.org
> e-mail:
> mailto:info@... .
>
> .
>
>
>
> Contact a Family use PHPlist,
> http://www.phplist.com .
>
> [End of e-Newsletter]
>
>
> --
> Contact a Family use PHPlist, www.phplist.com --
>
>

----- Original Message -----
From: "rare-disorders-admin" <rare-disorders-admin@...>
To: <toni.abram1@...>
Sent: Tuesday, April 07, 2009 3:18 PM
Subject: Rare Disorders E-newsletter - 7 April 2009


> ++++Contact a Family Rare Disorders E-newsletter Tuesday, 7 April 2009
>
> +++Contents.
>
> ++Section One: Contact a Family news.
>
> +01: Message from the Editor.
>
> +02: Take part in one of our podcasts.
>
> +03: New on-line forums.
>
> ++Section Two: General news and resources.
>
> +04: Have your say about special educational needs in SEN Magazine.
>
> +05: DIPEx Research Project - Jewish Health.
>
> +06: International Conference - care for offenders with a learning
> disability.
>
> +07: Young people's housing requirements.
>
> +08: International Research - NORD - The National Organisation for
> Rare Disorders in America.
>
> +09: GIG - insurance.
>
> +10: Rare Disease UK - comments required.
>
> +11: Mencap - disability awareness week 2009.
>
> ++Section Three: Groups news.
>
> +12: Brown-Vialetto-Van Laere syndrome(BVVL) - research and funding.
>
> +13: Life limiting conditions - on-line support group.
>
> +14: DiGeorge Syndrome - AGM and conference.
>
> +15: International Lymphoedema Framework - Conference.
>
> +16: Foetal Alcohol Spectrum Disorder Trust (FASD Trust) - education
> conference.
>
> +17: Headlines - family weekend.
>
> +18: AMEND - AGM and information day.
>
> +19: 22q13 - family day.
>
> +20: Niemann-Pick Disease Group (UK) - charity ball.
>
> +21: Children's Heart Federation - national sports fun day.
>
> +22: ASBAH - research study.
>
> +23: Gaucher Association - research.
>
> +24: Hypermobility Syndrome Association (HMSA) - social and support
> group meeting.
>
> .
>
> ++Section One: Contact a Family News.
>
> +01: Message from the Editor.
>
> Dear All,
>
> 30th anniversary celebrations. Unfortunately, 30 was some years ago
> for me, but this year Contact a Family are celebrating 30 years of
> strengthening families with disabled children. The official launch is
> on Tuesday 28 April 2009 with the release of a report, what makes my
> family stronger. This report is the result of the survey that was
> recently available on our website. There is a programme of events
> planned throughout our anniversary year, so do keep an eye on our
> website for further details. You could sign up to the RSS feed on our
> newspage to receive an automatic update.
>
> The weather is warming up and I think most people are planning their
> summer events - if I can be of any assistance to anyone do get in
> touch.
>
> Regards
>
> Louise
>
> Louise Derbyshire, telephone 020 7608 8715 or call the helpline on
> 0808 808 3555 and ask for me or email
>
> mailto:louise.derbyshire@... .
>
> +02: Take part in one of our podcasts.
>
> Contact a Family are looking for families to take part in our podcast
> series. We are developing a series of podcasts that look at the issues
> affecting families whose children have rare disorders.
>
> We would like to interview families, or affected adults, about their
> experiences of a disorder or having a child/children with a rare
> disorder. We are interested in hearing about any rare condition, or
> from any family whose condition is in our Directory. A member of
> Contact a Family staff will come to visit the family in their home or
> any other place that is convenient.
>
> Families whose children have very rare disorders often don't have a
> support group to turn to or access to other parents to share their
> experiences, so hearing the stories of other families can be a great
> source of support.
>
> For more information please contact Sasha Henriques, Information
> Officer (Rare Disorders), on telephone 020 7608 8714 or email
>
> mailto:sasha.henriques@...
>
> +03: New on-line forums.
>
> In 2004 Contact a Family launched its award winning on-line service
> MakingContact.org. There are over 6,000 parents registered to make
> contact with other families whose children have the same condition in
> order to gain, and give, support through the sharing of experiences
> and knowledge. Frequently we receive enquiries from parents who want
> to contact others who are affected by the same issues, regardless of
> their child's condition, and with this in mind we have developed a
> message board forum as part of the MakingContact.org service. Six
> message boards have been created covering topics that regularly come
> up when people call the helpline: education; medical issues;
> behaviour; working; growing up and transition; and share your day, to
> share your emotions, triumphs and frustrations. This is a free service
> so visit the forums and post your message today.
>
> http://www.makingcontact.org
>
> .
>
> ++Section Two: General news and resources.
>
> +04: Have your say about special educational needs in SEN Magazine.
>
> Are you a parent of a child with a special educational need? Do you
> have something you'd like to shout about?
>
> Maybe you would like to praise your child's school to the heavens, or
> you would like to raise an issue about special educational needs so
> professionals can read your views and take note.
>
> Whatever your view, SEN Magazine would like to hear from you. They
> are looking for one-off contributors for the new Point of View section
> which features two short articles written by a parent or guardian and
> a teacher or SENCO.
>
> If you have something you would like to shout about (good or bad!),
> please get in touch with Annie Makoff, the editor for SEN Magazine, by
> telephone on 01200 409801 or by email
>
> mailto:annie@...
>
> +05: DIPEx Research Project - Jewish Health.
>
> A new project - Jewish Health - is being carried out at the DIPEx
> Health Experiences Research Unit based at the University of Oxford.
> They would like to interview Jewish people who have direct or indirect
> experience of health issues that are often related to their ethnic
> background. This includes certain cancers, conditions like Tay Sachs
> disease, Gaucher Disease, cystic fibrosis, Canavans Disease, Crohn's
> Disease, Niemann-Pick syndrome as well as broader experiences of being
> a carrier for genetic conditions.
>
> While these health issues are not uniquely Jewish, the focus of this
> project is the way in which they are experienced within a Jewish
> context. The study will explore how people manage health and illness
> as well as issues surrounding death and burial practices. The Jewish
> population in Britain incorporates a range of people with varying
> commitment to Jewish practices, observances, culture and identity from
> the ultra Orthodox community to people who define themselves as
> atheist. They would like to interview people across this spectrum to
> produce a comprehensive picture of personal experiences of health
> issues among Jewish people.
>
> The outcome of the project will be a Jewish Health section on their
> award winning website
>
> http://www.healthtalkonline.org.uk
>
> If you would like to be involved in the project, or would like
> further details contact Sara Ryan on telephone 01865 289374 or email
>
> mailto:sara.ryan@...
>
> +06: International Conference - care for offenders with a learning
> disability.
>
> A conference is being held on Thursday 16 and Friday 17 April 2009 at
> the University of Central Lancashire, Preston to share best practice
> in providing care and treatment to offenders with a learning
> disability. The conference is aimed at raising awareness of
> professionals and there is a charge of one hundred and fourty pounds.
> For further information, please call 01772 893 809 or visit
>
> http://www.ldoffenders.co.uk/
>
> +07: Young people's housing requirements.
>
> In their January/February 2009 magazine, Mencap reported on a study
> that was carried out by Dimensions which looked at the experiencess of
> young people between the ages of 18 and 30 around transition from the
> family home into their own accommodation. Dimensions produced a report
> 'A Home of My Own' which includes advice for young people and their
> families, and best practice guidelines - visit
>
> http://www.dimensions-uk.org/ahomeofmyown
>
> +08: International Research - NORD - The National Organisation for
> Rare Disorders in America.
>
> NORD provided details of two international conferences which are
> being held in April and May:
>
> - The 10th International Conference: Living with Polio in the 21st
> Centry will be held in Georgia, America between Thursday 23 and
> Saturday 25 April 2009.
>
> - The Hereditary Hemorrhagic Telangiectasia (HHT) Foundation is
> holding a scientific conference in Santander, Spain between Wednesday
> 27 and Sunday 31 May 2009.
>
> +09: Genetic Interest Group (GIG) - insurance.
>
> An article in GIG's recent newsletter looked at an issue that many
> families are interested in - insurance. You can view this article by
> visiting their website and going to the publications and newsletters
> section, on page 6 of the winter 08/09
>
> http://www.gig.org.uk
>
> +10: Rare Disease UK - comments required.
>
> We have been contacted by Rare Disease UK who are looking for some
> �?opersonal/real stories�?� that can be inserted into their Business
> Plan. They would like to include some quotes from patients and would
> appreciate your help by answering the questions below.
>
> - Thinking back to your original diagnosis, can you give an example
> of how this process could have been improved if the healthcare
> professionals you met along your journey had heard/known about your
> rare disease?
>
> - Can you give an example of a situation which has occurred since
> your diagnosis where you have faced difficulty due to a lack of
> knowledge and understanding of your condition by a healthcare
> professional treating you?
>
> Although the answers to these questions could be lengthy, Rare
> Disease UK really need a short quote or a couple of sentences that can
> bring to life their aims and highlight the issues of families affected
> by rare disorders. This information will go to new members, policy
> makers, MPs and other stakeholders.
>
> To have your quotes included in the business plan for Rare Disease
> UK, please contact Melissa Hillier by email on
>
> mailto:melissa@...
>
> +11: Mencap - disability awareness week 2009.
>
> Disability awareness week is Monday 22 to Sunday 28 June and the
> theme is Changing Places, Changing Lives. For more details of this
> campaign, visit
>
> http://www.mencap.org.uk/ldw
>
> or visit Changing Places website at
>
> http://www.changing-places.org
>
> .
>
> ++Section Three: Groups news.
>
> +12: Brown-Vialetto-Van Laere syndrome(BVVL) - research and funding.
>
> We have recently been contacted by Laurian Scott whose family is
> affected by Brown-Vialetto-Van Laere syndrome (BVVL). This condition
> is a progressive neurodegenerative motor neuron disorder, which
> specifically includes palsies of the cranial nerves. There is no
> support group for this condition in the UK and little information is
> available. Currently a worldwide identification and sample collection
> is underway, and more patients are needed to participate in the
> research to isolate the gene for BVVL so that geneticists can begin
> the search for a cure. Laurian lives in America and has set up a
> foundation to raise money to support this much needed research.
>
> To find out more about this condition and the current research
> project, please visit
>
> http://www.bvvlinternational.org
>
> For details of the research fund, please visit Laurian's site at
>
> http://www.theolivebranchfund.org
>
> +13: Life limiting conditions - on-line support group.
>
> Parents of a child with a life limiting condition have set up an
> online forum for families of children with a life limited condition,
> regardless of the condition or their geographic location within the
> UK. You can access this forum at
>
> http://www.thesophiestory.co.uk/forum/
>
> +14: DiGeorge Syndrome - AGM and conference.
>
> Max Appeal who support families affected by DiGeorge Syndrome are
> holding their 8th AGM and conference on Saturday 18 April 2009 at
> Imperial College, London. They have expert speakers, international
> speakers, details of new research and provide an opportunity for
> families to get together and share their experiences.
>
> For further details call 0800 389 1049 or email
>
> mailto:info@...
>
> or visit their website at
>
> http://maxappeal.org.uk
>
> +15: International Lymphoedema Framework - conference.
>
> The Lymphoedema Support Network highlighted in a recent newsletter
> that there would be an International Lymphoedema Framework Conference
> held at Ascot Racecourse between Tuesday 21 and Thursday 23 April
> 2009. The conference is being organised by Wounds UK and is free to
> patients, although there is a charge for the evening gala dinner. For
> further details, please contact Karen Friett on 020 7352 4249 or visit
> their website at
>
> http://www.wounds-uk.com/lymphoedema_conference_09.shtml
>
> +16: Foetal Alcohol Spectrum Disorder Trust (FASD Trust) - education
> conference.
>
> The Trust have arranged a half day conference to look at the issue of
> educating children affected by FASD. The event will take place on
> Wednesday 22 April 2009 at the Witney Lakes Resort in Oxfordshire.
> Although aimed at teachers, it will also be of value to parents and
> carers. For further information on costs, contact the FASD Trust on
> 0560 268 9478 or visit their website at
>
> http://www.fasdtrust.co.uk
>
> +17: Headlines - family weekend.
>
> Headlines support those affected by craniofacial disorders and are
> holding their family weekend on Saturday 2 and Sunday 3 May 2009 at
> the Holiday Inn, Coventry. For more details of this event, please
> visit their website at
>
> http://www.headlines.org.uk/
>
> +18: AMEND - AGM and information day.
>
> AMEND are holding their AGM and information day on Saturday 9 May
> 2009 at St George's Hall in Exeter. For further details of the
> programme and cost, contact AMEND via their website at
>
> http://www.amend.org.uk
>
> +19: 22q13 - family day.
>
> A family day is being held on Saturday 9 May for families with
> children with the chromosome 22q13 deletion. There is a programme of
> events for kids, parents and siblings throughout the day. For more
> information, contact Alison Turner by email
> mailto:alisonjaneturner@...
>
> +20: Niemann-Pick Disease Group (UK) - charity ball.
>
> The Hope for Hollie campaign are holding a charity ball on Saturday
> 16 May 2009. All money raised will be going to the Niemann-Pick
> Disease Group (UK). To find out more and book tickets, please visit
> their website at
>
> http://www.hopeforhollie.co.uk
>
> +21: Children's Heart Federation - national sports fun day.
>
> This May the Children's Heart Federation and member groups will be
> raising awareness of congenital and acquired heart disease in children
> and young people, under a collective campaign called Hearts4Hearts.
> The national Hearts4Hearts week will run from Saturday 9 to Sunday 17
> May 2009, with many different local and national events and activities
> taking place, including:
>
> - BBC Radio 4 appeal, Sunday 10 May 2009
>
> - Parliamentary Reception, Thursday 14 May 2009
>
> - Family Sports Day, Saturday 16 May 2009
>
> The family sports day will be held between 11am and 3.30pm at Weston
> Park near Birimingham. They are offering lots of fun activities and
> sports. Visit their website for further information
>
> http://www.chfed.org.uk
>
> For further details about Weston Park visit
>
> http://www.weston-park.com
>
> +22: ASBAH - research study.
>
> In a recent newsletter, ASBAH, who support families whose children
> are affected by spina bifida and hydrocephalus, reported on the
> effects of aging with spina bifida and hydrocephalus. If you are
> interested in reading this report, visit ASBAH's website
> http://www.asbah.org/
>
> +23: Gaucher Association - research.
>
> Gaucher Association reported on a number of research projects in
> their recent newsletter. To find out more about research into this
> condition, use the research link from their website
>
> http://www.gaucher.org.uk
>
> +24: Hypermobility Syndrome Association (HMSA) - social and support
> group meeting.
>
> The HMSA are holding a social and support group meeting in Plymouth
> on Saturday 6 June 2009. The event is for anyone living with a
> long-term chronic health condition. There are people coming from
> around the country, but it is a ticket only event. There are still
> tickets available. This is an opportunity to be with people who do
> know how you feel, to make new friends, meet old friends and share
> tips and advice. There are no medical talks, this is a social event,
> but there will be medical professionals attending. For further
> details, please contact Donna Wicks on 0845 345 4465 or email
>
> mailto:donna@...
>
> or
>
> mailto:dinnawicks@...
>
> Details can also be found on the HMSA website
>
> http://www.hypermobility.org/plym2009.php
>
> .
>
> .
>
> ++ Change in group details?
>
> The Contact a Family Directory is a valuable way of getting the
> details of your rare disorder support group to families who are
> affected. According to ranking.com Contact a Family is the rare
> disorders site which receives the highest numbers of visitors
> worldwide. We try very hard to keep the site up to date so that
> families receive accurate information. Please let us know if the
> details of your support group have changed. To check your contact
> details and description of what your group does, go to
>
> http://www.cafamily.org.uk/home.html
>
> The listing of any product, publication, event or web link does not
> constitute endorsement by Contact a Family.
>
> If you do not have access to the internet and would like alternative
> contact details for any of the organisations included in this
> newsletter, please contact me on the number or address below.
>
> If you have not received this newsletter direct and would like to
> subscribe for free, please go to the 'Help for Parents' Groups'
> section of our website http://www.cafamily.org.uk .
>
> If you have any items of news from your group which you feel would be
> of interest to others in the rare disorders field and which you would
> like to include in the next e-newsletter, please get in touch. The
> deadline for the next issue is Tuesday 26 May 2009.
>
> I would be happy to receive any feedback or success stories resulting
> from the articles included in this or previous e-newsletters.
>
> Louise Derbyshire
>
> Family Linking Officer/Editor
>
> mailto:louise.derbyshire@... .
>
> Direct Tel: 020 7608 8715.
>
> ---------------------------------------------------------------------------
>
> Contact a Family is a founder member of Every Disabled Child Matters,
> fighting for rights and justice for every disabled child. To join the
> campaign visit http://www.edcm.org.uk - and ask everyone you know to
> do the same.
>
> ---------------------------------------------------------------------------
>
> [End of e-newsletter].
>
>
>
> ++ Subscription details.
>
> To unsubscribe from this e-Newsletter goto
> ?uid=c5c5cb85426277cb7bd61d483e967aeb .
>
> To change your preferences go to
>
http://lists.cafamily.org.uk/lists/?p=preferences&uid=c5c5cb85426277cb7bd61d483e\
967aeb
> .
>
> NOTE: those links may have wrapped in your e-mail client, make sure you
> enter the entire URL when browsing
> to the relevant page.
> .
>
> ++ Contact details.
>
> This E-newsletter conforms to the accessible Text Email Newsletter (TEN)
> Standards. For details see Web:
> http://www.headstar.com/ten .
>
> For details of this newsletter please go to Web:
> http://lists.cafamily.org.uk .
>
> Questions about the newsletter should be sent to e-mail:
> mailto:info@... .
>
> Contact a Family is a UK based, registered charity for families with
> disabled children. We offer a helpline (free in the UK) for families,
> Tel: 0808 808 3555. Text: 0808 808 3556. Tel: 020 7608 8700 Admin.
> Websites:
> http://www.cafamily.org.uk .
> http://www.makingcontact.org
> e-mail:
> mailto:info@... .
>
> .
>
> Contact a Family use PHPlist,
> http://www.phplist.com .
>
> [End of e-Newsletter]
>
>
> --
> Contact a Family use PHPlist, www.phplist.com --
>
>

Thought this might be of interest, Sarah.
http://www.mda.org/publications/Quest/extra/jun09/air_travel.html

Alert: New Air Regs
Air travelers using respiratory equipment must follow new labeling regulations
-- or risk losing their seats

Travelers with respiratory difficulties who use commercial airlines need to be
aware of a new labeling requirement for ventilators, respirators, positive
airway pressure devices (i.e., CPAP, BiPAP) and personal oxygen concentrators.

Trying to travel without following the new regulations can result in being
denied a seat, or being required to turn off the respiratory equipment during
the flight. The new rule is from the U.S. Department of Transportation (DOT),
and relates to existing Federal Aviation Administration (FAA) regulations.

Equipment must be labeled

Effective May 13, DOT's rule "Nondiscrimination on the Basis of Disability in
Air Travel" applies to passenger aircraft with seating capacity of 19 or more.

The regulation "�requires U.S. carriers to permit individuals to use electronic
respiratory assistive devices in the passenger cabin so long as the devices have
been tested and labeled by their manufacturer(s) as meeting the applicable FAA
[Federal Aviation Administration] requirements for medical portable electronic
devices�".

The absence of a label on a passenger's respiratory equipment is sufficient
reason for airlines to refuse the person a seat on the plane. However, according
to the new DOT rule, if the label is present (and other qualifying conditions
are met), the carrier must allow the passenger to board.

Extra power supply may be required

The FAA allows airlines to require respiratory-equipment users to have enough
battery power to operate the equipment for at least 150 percent of the
anticipated maximum flight time. If passengers can't show they have enough power
to last that amount of time, an airline can refuse to let them board.

In addition, some airlines may require that passengers flying with respiratory
equipment provide notice to the airlines at least 48 hours in advance, and that
they show up at the gate one hour earlier than normal boarding time so airline
staff can ensure the equipment is properly labeled.

Passengers should check with their specific air carrier well in advance of their
flights to learn what is required.

Not the airlines' job

DOT says the airlines are responsible for making sure every device on the
aircraft meets FAA standards for electromagnetic and radio frequency
interference emissions, but they aren't responsible for conducting the physical
tests on a device to ensure those standards are met.

The agency will not require "carriers or any other entity to produce a central
list of approved or disapproved devices."

The bottom line: Responsibility falls to respiratory-equipment users to obtain
appropriate labels for their equipment, certifying that the equipment meets
standards.

The full text of the May 13 DOT rule and frequently asked questions about the
ruling are posted on the DOT site.

The May 2009 supplement to the journal Pediatrics is all about management of
neuromuscular disease.  I found the articles really interesting.  I am going to
post them in the data base.  Sarah

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Myotubular_Myopathy
group.

   File        : /2009, Airway Clearance in Duchenne Muscular Dystrophy.pdf
   Uploaded by : patsarah2006 <patsarah@...>
   Description : Airway clearance in DMD

You can access this file at the URL:
http://groups.yahoo.com/group/Myotubular_Myopathy/files/2009%2C%20Airway%20Clear\
ance%20in%20Duchenne%20Muscular%20Dystrophy.pdf

To learn more about file sharing for your group, please visit:
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Regards,

patsarah2006 <patsarah@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Myotubular_Myopathy
group.

   File        : /2009, Ambulatory Physiologic Monitoring in NMD.pdf
   Uploaded by : patsarah2006 <patsarah@...>
   Description : Ambulatory monitoring

You can access this file at the URL:
http://groups.yahoo.com/group/Myotubular_Myopathy/files/2009%2C%20Ambulatory%20P\
hysiologic%20Monitoring%20in%20NMD.pdf

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patsarah2006 <patsarah@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Myotubular_Myopathy
group.

   File        : /Equipment Options for Cough Augmentation, Ventilation.pdf
   Uploaded by : patsarah2006 <patsarah@...>
   Description : Cough augmentation

You can access this file at the URL:
http://groups.yahoo.com/group/Myotubular_Myopathy/files/Equipment%20Options%20fo\
r%20Cough%20Augmentation%2C%20Ventilation.pdf

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patsarah2006 <patsarah@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Myotubular_Myopathy
group.

   File        : /Pathophysiology of Respiratory Impairment in Ped NMD.pdf
   Uploaded by : patsarah2006 <patsarah@...>
   Description : What causes breathing probs in NMD

You can access this file at the URL:
http://groups.yahoo.com/group/Myotubular_Myopathy/files/Pathophysiology%20of%20R\
espiratory%20Impairment%20in%20Ped%20NMD.pdf

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patsarah2006 <patsarah@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Myotubular_Myopathy
group.

   File        : /PFT in NMD.pdf
   Uploaded by : patsarah2006 <patsarah@...>
   Description : Breathing tests

You can access this file at the URL:
http://groups.yahoo.com/group/Myotubular_Myopathy/files/PFT%20in%20NMD.pdf

To learn more about file sharing for your group, please visit:
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Regards,

patsarah2006 <patsarah@...>

Hello Everyone

Just a quick reminder that work on the next Information Point newsletter is now
underway.�Thank you to everyone who has submitted articles so far.

There is still time to submit - maybe you have been involved in a project,
meeting or get together or will be over the coming months, maybe you have
achieved something you would like to share with the community or maybe you have
been involved in a fundraising event or something else.

Closing date for submissions is 14 August 2009.�


�Toni xx
Sent using BlackBerry� from Orange

Has anyone had issues with attention specificly their kid being diagnoised with
ADD? In regards to ADD, what about medicine tried to help with attention.
Any thoughts are appreciated...
Corey

Wen jsut got back fro the GI dr. he wants to test spencer for liver disease
because he has never had normal enzyme count. has anyone ever incountered
anything with liver issues. he currently has "sludge" in his gallbladder.
Corey

Sent using BlackBerry� from Orange