Wednesday webLINK

wednesdayweblink

At the time of writing Googling “Prader-Willi Syndrome” produces over 1.1 million results.  A YouTube search alone produces over 6,000. Many of these links offer contradictory messages about what PWS is or might mean for an affected individual or their family.  Many more are outdated and tell stories of how PWS appears to have affected some individuals before early diagnosis and current medical and therapeutic interventions became common.

As the sheer volume and dubious quality of internet commentary and “resources” on PWS may seem overwhelming, PWSAI has decided to draw your attention to one or more link each Wednesday.  While all of the content in these links will probably not correspond to the individual experiences of each person with PWS and their families, we are sharing them because we hope that at least some of them will be of interest.  If there is a resource that is freely available online that you have found particularly useful please let us know so we can include it.

See below for our latest Wednesday webLINK…!

27 August 2014

In 2008 the PWSA (USA) Clinical Advisory Board published a consensus statement on Osteoporosis evaluation and therapy in Prader-Willi Syndrome. You can view it at: http://www.pwcf.org/wp-content/uploads/2012/02/Osteoperosis-Evaluation-Therapy-2008.pdf

20 August 2014

This week’s webLINK is a 2011 guide to growth hormone and Prader-Willi Syndrome for families and care providers. The guide, which is freely made available by PWSA USA, can be accessed here: http://www.pwsausa.org/publications/Growth%20Hormone%20booklet%20final.pdf

30 July 2014

This week’s webLINK is a series of articles made available by PWSA USA on the use of supplements by people with PWS. The use of carnitor, CoQ10, fish oils and vitamins in high doses are all considered in these documents, which you can access at: http://www.pwsausa.org/medical/medical-issues/supplements

23 July 2014

If I could only have one PWS resource the PWS Medical Alerts Booklet would probably be the one I’d choose. It’s intended to convey essential medical information both to family members and to medical professionals who may have limited or no knowledge of PWS.

It is currently available in 16 languages and may be accessed via the IPWSO website at: http://www.ipwso.org/#!medical-alerts-booklet/czxp

9 July 2014

This week’s webLINK is to a thoughtful presentation by a parent on her family’s experience with PWS.

You can access it at: http://mostgene.org/wordpress/wp-content/uploads/Kellerman_PWS-Parents_persepct.pdf

2 July 2014

This week’s webLINK is to a newly published article by Colin Reilly. Among other things it found that rates of diagnosis of ASD and ADHD were lower among people with PWS and other neurogenetic syndromes than had been suggested by previous research.

You can access the article here: http://onlinelibrary.wiley.com/doi/10.1111/jir.12147/abstract

18 June 2014

This week’s webLINK is to a PWS Classic made available by PWSA (USA) and entitled “Medical Alerts”. Keep it close at hand (downloaded on your phone, in your car) in case you ever find yourself in a hospital or other environment where you need to explain key medical features of PWS.

You can access the full document here: http://www.pwsausa.org/support/MEDICAL%20ALERT%20REVISED%202009.pdf

3 June 2014

This week’s webLINKs are to a series of research bulletins developed by the Middletown Centre for Autism. These bulletins summarise findings in relation to specific areas of relevance to those working in education with people with autism. With bulletins on topics such as managing anxiety, social communication, and transition, many of these bulletins are likely to also be of relevance to people with PWS.

You can access the bulletins here: https://www.middletownautism.com/research/

28 May 2014

This week’s webLINK is to a 2013 review of endocrine issues in PWS.
You can access it at: http://www.ijpeonline.com/content/pdf/1687-9856-2013-14.pdf

21 May 2014

This week’s webLINK is to a 2014 article on constipation in adults with PWS.  It found that constipation was very common in PWS and that patients with PWS also have an increased prevalence of prolonged gastrointestinal transit time.

You can access the full article here: http://www.biomedcentral.com/1471-230X/14/63

14 May 2014

This week’s webLINK is to a documentary featuring adults with PWS and family members of people with PWS. Unlike a lot of PWS films this one isn’t geared towards fundraising and doesn’t gloss over challenges, but rather is all about sharing the perspectives of this particular group of people.

You can access it at: https://www.youtube.com/watch?v=CHKFpONXrf8

30 April 2014

This week’s webLINK is to a new FamCare article by IPWSO that deals with story-telling (confabulation) in PWS.  You can access it at: http://media.wix.com/ugd/a71d4c_86929ae1efaf4dca9856013fed1ff590.pdf

9 April 2014

This week’s webLINK is to a 2003 article that reports on a pilot study on the use of N-Acetylcysteine for skin-picking in Prader-Willi Syndrome. You can access it here: http://www.fpwr.org/wp-content/uploads/2014/02/pharmaNAC.pdf

2 April 2014

This week’s webLINK is to a 2012 article by Dr. Jennifer Miller that suggests that a reduced-energy intake, well-balanced diet improves weight control in children with Prader-Willi syndrome. You can access it here: http://media.wix.com/ugd/a71d4c_4231a1b96ccc43fa8ff4e5d17895c6a4.pdf

26 March 2014

This week’s webLINK is to an article on vision and care of the eyes. It is made available by PWSA UK and can be accessed here: http://www.pwsa.co.uk/index.php/what-is-pws/193-vision-and-care-of-the-eyes-in-pws

19 March 2014

This week’s link is to an article that examined media coverage of Prader-Willi Syndrome in US and international newspapers between 2000 and 2005.

You can find it at: http://dsq-sds.org/article/view/22/22

12 March 2014

This week’s webLINK is to a Talking Glossary of Genetic Terms.  So, whether you want a basic explanation for a deletion, duplication, stem cell or syndrome, you can just click on the relevant term and listen.

You can access the Talking Glossary at: http://www.genome.gov/glossary/index.cfm

5 March 2014

This week’s webLINK is to a beautifully-written, reflective and honest article by Steve Edwards about his search for beauty amid the daily grind of parenting a child with special needs.
You can access it at: http://goodmenproject.com/families/tmb-pulling-one-dads-search-beauty-daily-parenting-routine/

26 February 2014

This week’s webLINK is to a 2013 article concerned with the care of adults with PWS in General Practice.  You can access it at: http://www.racgp.org.au/afp/2013/januaryfebruary/prader-willi-syndrome/

19 February 2014

This week’s webLINK is to the description and contents page of a very useful 2013 book edited by Charlotte Hoybye and simply entitled ” Prader-Willi Syndrome”.  Unfortunately, it’s expensive, but as it features articles from a wide range of renowned PWS researchers, it may still be worth the investment.

You can find out more about it at: https://www.novapublishers.com/catalog/product_info.php?products_id=42412

12 February 2014

This week’s webLINK is to a video by a sister of a person with PWS in which she discusses the importance of including siblings when considering the needs of people with PWS.  You can access the video here:

5 February 2014

This week’s webLINKs are to a selection of academic articles relating to behavioural issues in PWS.  They are as follows:

Behavioral profile of adults with Prader-Willi syndrome: correlations with individual and environmental variables. 2013 article available at: http://www.jneurodevdisorders.com/content/5/1/18

Clinical management of behavioural characteristics of Prader-Willi Syndrome.  2010 article available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874334/

Prader-Willi syndrome, compulsive and ritualistic behaviours: the first population-based survey. 2002 article available at: http://bjp.rcpsych.org/content/180/4/358.full

29 January 2014

This week’s webLINKs are to resources on behaviour management and understanding behaviours in PWS.  They are as follows:

Kevin Jackson article made available by PWSA USA at: http://www.pwsausa.org/support/crisisteam/Tools/jacksonbehavioralarticle_20080926125845.pdf

Behaviour Management in PWS.  PWSA UK resource available at: http://www.pwsa.co.uk/images/downloads/pdfs/behaviour_management.pdf

The PWS Personality.  Pittsburgh Partnership Resource available at: http://www.pittsburghpartnership.com/handouts/The%20PWS%20Personality%20greyscale%208%2011%20handout.pdf

Understanding the Behaviours.  IPWSO resource available at: http://www.ipwso.org/#!understanding-behaviours/c23h5

22 January 2014

This week’s webLINK is to a film about a day in the working life of adults with PWS in Germany.

You can access it here: http://www.youtube.com/watch?v=JEmxnw0W8ts

15 January 2014

This week’s webLINKs are to a selection of blog posts written by parents of children or adults with PWS. While the links below are to single posts, all these blogs offer many more interesting posts too.

http://ourhungryhouse.blogspot.ie/2013/02/why-is-food-so-important-anywayits-just.html

http://fpwr.org/blog/rachels-corner/12/11/merging-i-pws

http://adrakesprogress.blogspot.co.uk/2013_01_01_archive.html

http://myhungryboy.blogspot.ie/2014/01/the-good-bad-and-stinky.html

8 January 2014

Our first Wednesday webLINK of 2014 is to a resource for parents with newborns, which was recently made available by PWSA USA.  You can access it here: http://origin.library.constantcontact.com/download/get/file/1101682021419-217/When+Your+Baby+is+in+the+Hospital+NICU.pdf

18 December 2013

Want to know what Irish politicians have been saying about Prader-Willi Syndrome? This week’s webLINK is to the Houses of the Oireactas website where you can read each Dáil and Seanad debate in which PWS has been mentioned. You can access it here: http://search.gov.ie/sites/debates.oireachtas.ie/?q=prader&x=0&y=0&hse=DAL&fd=08&td=08&fy=1997&ty=1997&fm=04&tm=04

11 December 2013

This week’s webLINK is to a database of current and recent Irish family carer research. It has been compiled by Care Alliance Ireland and can be accessed via their website at: http://www.carealliance.ie/publications_currentfamilycarerresearch

4 December 2013

This week’s webLINKs are to resources on scoliosis in PWS and are as follows:

27 November 2013

This week’s webLINKs are concerned with seizures in people with PWS and are as follows:

Overview of PWS seizures and medications from PWSA USA: http://www.pwsausa.org/medical/seizures-Medication.htm

2009 article on characteristics and frequency of seizure disorder in 56 patients with PWS: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.32934/abstract

2010 article on epilepsy in Prader-Willi Syndrome: http://www.sciencedirect.com/science/article/pii/S1525505010004816

20 November 2013

This week’s webLINKs are to a selection of blog posts written by parents of children or adults with PWS. While the links below are to single posts, all these blogs offer many more interesting posts too.

What they don’t seehttp://fpwr.org/blog/rachels-corner/11/10/what-they-dont-see

Stab me in the heart with a rusty spoonhttp://halfpastnormal.wordpress.com/2012/04/26/%EF%BB%BF%EF%BB%BF%EF%BB%BFstab-me-in-the-heart-with-a-rusty-spoon/

You know you’re a PWS Mom/Dad ifhttp://divingintothewaves.blogspot.ie/2010/06/you-know-youre-pws-momdad-if.html

Mum, I’ve baked you a cake http://ipwso.blogspot.com/2012/07/mum-ive-baked-you-cake_27.html

13 November 2013

This week’s webLINK is to a practical advice sheet produced by PWSA USA and the FPWR on how to evaluate online information on PWS.  You can access it via the FPWR website at: http://www.fpwr.org/blog/research/13/10/first-do-no-harman-internet-warning

6 November 2013

This week’s webLINKs are to publications based on PWS research previously conducted in Ireland (see also our new ‘Research’ page!). They are:

Mental Health Problems in Children with Prader-Willi Syndrome.  This research was led by Dr. Norbert Skokauskas and you can access an article based on it at: http://www.ncbi.nlm.nih.gov/pubmed/22876265

Educating Students with Prader-Willi Syndrome.  This research was conducted by Dr. Colin Reilly and you can access an article based on it at: https://pwsaireland.files.wordpress.com/2013/01/colin-reilly-article.pdf

There has been ongoing research by the Paediatric Endocrinology Team at the National Children’s Hospital, including by Prof. Hilary Hoey, Prof. Edna Roche and Dr. Judith Meehan.  This work includes the first Irish national study of children with Prader-Willi Syndrome.  A selection of research publications from this group includes:

  • New Approaches in Prader-Willi Management – accessible at: https://www.icgp.ie/assets/44/F744A9A1-19B9-E185-83B79889F71A73F0_document/Article_3.pdf
  • A Comprehensive Study of Irish Children with Prader-Willi Syndrome ages 2-14 years.  Not freely available online, but this has been described in the International Journal of Paediatric Obesity, 5, (1), 2010, p60 and can be accessed by those with institutional access to this journal.
  • Sleep abnormalities in children with Prader-Willi Syndrome.  Not freely available online, but this has been published in the papers of the European Society for Paediatric Endocrinology Scientfiic Meeting, 2005

30 October 2013

Family Care (FamCare) is a project of the International Prader-Willi Syndrome Organisation (IPWSO) designed to support families whose adult son or daughter with PWS lives at home.  FamCare has recently produced a new document on living a healthy adult lifestyle with PWS.  You can access it at: http://media.wix.com/ugd/a71d4c_cac83120da1a3b1b515269cba094ea89.pdf

23 October 2013

We all know that the genetics of PWS are complicated. Now it seems that they may be even more complicated than was previously thought. This week’s webLINK is to a very interesting new blog by the Foundation for Prader-Willi Research. You can access it at: http://fpwr.org/blog/research/13/10/game-changer-pws-genetics

16 October 2013

At our recent PWSAI Family Support Weekend we were delighted to welcome many grandparents of people with PWS.  We know that being a grandparent of a child with PWS is not always easy, but there are resources available specifically for grandparents including the following:

PWS New Zealand has compiled advice for grandparents, which is available at: http://www.pws.org.nz/just-for-grandparents

Terrance James has written 3 blog posts just for grandparents, which you can access at: http://www.prader-willi.ca/category/grandparents/

PWSA UK provide a letter from a grandparent, which you can access at: http://www.pwsa.co.uk/images/downloads/pdfs/grandparents.pdf

PWSA USA provide a Grandparents booklet, which can be ordered via: http://www.pwsausa.org/booklets/grandparentbooklet.htm

9 October 2013

Gastroparesis was prominently highlighted by many PWS associations earlier this year following the tragic death of a young boy with PWS.  In response PWSA USA produced an article about gastroparesis, which you can access via PWSA USA’s website at: http://www.pwsausa.org/medical/GI-Gastroparesis-The-Newest-Threat-2013.pdf

2 October 2013

Family Care (FamCare) is a project of the International Prader-Willi Syndrome Organisation (IPWSO) designed to support families whose adult son or daughter with PWS lives at home. FamCare will be producing leaflets on topics connected with the care and management of the syndrome.  To date FamCare has produced leaflets on skinpicking and coping with change.  These can be accessed via IPWSO’s website at http://www.ipwso.org/#!famcare/canb

25 September 2013

A presentation by Dr. Barbara Whitman at the July 2013 IPWSO conference suggested that there may be an increasingly intimate relationship between PWS and Autism Spectrum Disorder (ASD).  This implies that the PWS community may have much to learn from ASD research.  This week’s webLINKs focus on ASD and are as follows:

  1. Dr. Whitman’s presentation, which can be accessed at: http://www.pwsa.co.uk/images/downloads/pdfs/parent_prog_autism.pdf
  2. A series of presentations made at the June 2013 ASD Conference held in NUI Galway.  These can be accessed at: http://www.conference.ie/Conferences/menu.asp?menu=1353&Conference=233

18 September 2013

A new study has been published examining the long-term effects of growth hormone treatment in PWS. The good news is that these effects appear to be positive. The study, conducted in the Netherlands, and part-funded by Pfizer, examined a large sample (60 children) for a long period (8 years) and found that growth hormone helped maintain healthy body weight, height, and head circumference, bringing all of these variables into the normal range for children of that age. There were no negative effects on blood sugars (which would affect a person’s risk of diabetes), blood serum lipids (which would affect risk of heart disease), or bone strength (which would affect risk of osteoperosis). 

You can read the abstract of the study at the Journal of Clinical Endocrinology & Metabolism website: http://jcem.endojournals.org/content/early/2013/08/30/jc.2013-2012.abstract?rss=1

The publication is available only on a pay-per-view basis, but a slightly longer description has been posted on Healio.com’s ‘Endocrinology Today’ page: http://goo.gl/aOZ5g9. Unfortunately, the headline on this version is a little misleading. It suggests that growth hormone was found to ‘slow the course of PWS’ in general — in fact, the study only looked at how growth hormone affected aspects of body weight and shape. Nonetheless, the research gives us promising new information about the benefits and safety of growth hormone in PWS.

11 September 2013

For many years there were few accessible resources on aging in Prader-Willi Syndrome.  Thankfully, many more relevant resources are now available including the following:

  1. A selection of articles originally published by PWSA USA in Volume #36 of “The Gathered View”.  These have been generously made available by PWSA USA through the IPWSO website at: http://www.ipwso.org/assets/Uploads/Articles/Aging-in-PWSCollected-articles.pdf
  2. An accessible summary of key medical issues for adults with PWS prepared for IPWSO, which can be accessed at: http://www.ipwso.org/support/health-and-wellness/
  3. A selection of presentations made at the adults programme of the 2013 IPWSO Conference.  They can be accessed at: http://www.pwsa.co.uk/index.php/list-all-categories/79-slider/310-international-conference-2013-abstracts-and-presentations

4 September 2013

Do you want to keep up to date with the latest PWS research?  Today’s links are to a selection of relevant PWS research sites as follows:

PubMed is a free resource that provides access to over 22 million citations for biomedical literature.  It grants access to abstracts (or summaries) of publications as well as many complete publications.  Enter “Prader-Willi Syndrome” in the search field to find relevant material.  You can access PubMed at: http://www.ncbi.nlm.nih.gov/pubmed

Prader-Willi Syndrome Research Today is a free monthly online journal that collates and summarizes the latest research about Prader-Willi Syndrome.  You can access it at: http://prader-willisyndrome.researchtoday.net/

The Foundation for Prader-Willi Research is a large funder of PWS research.  It provides information on the research it supports at: http://www.fpwr.org/

28 August 2013

For the final week in our back to school special the following links may be of interest:

  1. Great ideas about making visual schedules and supports: http://rainbowswithinreach.blogspot.ca/2012/06/visual-prompts-schedules-and-supports.html?showComment=1339630113132
  2. Some suggestions for imaginative incentives to be used in school or at home: http://lathamcenterspws.blogspot.ie/2013/04/tip-of-week-imaginative-incentives.html
  3. Interesting article on establishing good communication between parents and teachers: http://www.specialneeds.com/children-and-parents/general-special-needs/dear-parents-dear-teachers-how-bridge-comm#
  4. And, finally, PWSA have made available their recent Getting Ready for School webinar at: https://pwsausa.megameeting.com/recplayback/?id=124092#recid=29303&key=99663d9063904cad3cce410e3064ab24&language=English

You can also access the slides from that webinar at: http://library.constantcontact.com/download/get/file/1101682021419-196/Getting+Ready+For+School+Slides+With+Charts.pdf

21 August 2013

For week 2 of our 3-part series of educational webLINKs we suggest the following links relating to Individual Educational Programmes (IEPs):

  1. The National Council for Special Education provide guidelines on IEPs and templates that can be viewed at: http://www.ncse.ie/uploads/1/final_report.pdf
  2. The Special Educational Support Service also provide information on IEPs at: http://www.sess.ie/resources/teaching-methods-and-organisation
  3. Also attached is a recent example of an IEP prepared for a child with PWS in Senior Infants in Ireland: DOWNLOAD HERE

14 August 2013

With September fast approaching, the next three week’s webLINKs will focus on all things educational. This week, we have a selection of educational links as follows…

  1. PWSA (USA) recently launched a new free resource called School Times.  This bi-monthly e-letter focus solely on school issues for the PWS community.  To sign up email Evan Farrar at cic3@pwsausa.org
  2. Tanya Johnson recently invited PWSAI members to join her Education and Advocacy Facebook group.  If you wish to do so you can request an invite at: https://www.facebook.com/groups/459882400757033/
  3. There continue to be great PWS-specific educational resources available from links, including:
    1. http://www.pwsausa.org/Educator/
    2. http://www.pwsa.co.uk/index.php/what-is-pws/135-educating-the-child-with-pws
    3. http://www.pws.org.nz/educational-workshops/

7 August 2013

Prader-Willi Syndrome: A Primer for Clinicians. This document provides a detailed and current introduction to key medical issues relating to PWS written by clinicians with many years of experience dealing with patients with PWS. You can access it at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3217845/

31 July 2013

Until recently PWS has been described as having two distinct nutritional phases: poor feeding in infancy, and hyperphagia thereafter. However, researchers now suggest that seven distinct nutritional phases can be identified.

These phases are succinctly described in Table 1 of the original article, which can be viewed at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3285445/

24 July 2013

Need to know Nutrition for Children with Prader-Willi Syndrome is an accessible guide for parents and carers first published in 2012.

You can access it here: http://www.ipwso.org/assets/publications/Need-to-know-Nutrition-for-children-with-Prader-Willi-Syndrome-web-cover.pdf

17 July 2013

Jacob Zawitz, an articulate and inspiring man with PWS, talked about his personal story at the 2013 Foundation for Prader-Willi Research conference held in Toronto.

You can access a video of his presentation here:

10 July 2013

Dental abnormalities are among the many challenges posed by PWS. A recent Foundation for Prader-Willi Research blog post summarises key dental issues and identifies recent relevant publications.

You can access this blog post here: http://www.fpwr.org/blog/research/13/03/oral-health-pws

3 July 2013

Exercise and Physical Activity for Children with Prader-Willi Syndrome is an accessible guide for parents and carers to exercise requirements for children with PWS.

You can find it here: http://www.som.uq.edu.au/media/188825/Prader%20Willi%20book%20web.pdf

26 June 2013

Dr Alastair Garfield and Kate McAllister explain how computer technology can be used to further research into hyperphagia in Prader-Willi Syndrome.

19 June 2013

New international consensus guidelines for GH therapy in PWS are now available. A blog describing the guidelines along with the full publication from the Journal of Clinical Endocrinology and Metabolism can be accessed here: http://www.fpwr.org/blog/research/13/06/gh-consensus-guidelines-pws-downloadable

12 June 2013

Anxiety is often described as one of the most challenging symptoms of PWS. This week’s webLINK is a presentation by Elizabeth Roof about anxiety in PWS. It was given at the Foundation for Prader-Willi Research Canada’s conference in April 2013.

Access the video here:

5 June 2013

The IPWSO Blog. To access news, views and thoughts from the International Prader-Willi Syndrome Organisation click here: http://ipwso.blogspot.ie/

(And to find out more about the 8th International Prader-Willi Syndrome Organisation Conference, which will take place in July 2013 in Cambridge, see here: http://www.pws2013.co.uk/)

29 May 2013

Inspiring speech from Canadian Paralympics and Special Olympics swimmer, Megan Michie, who also has PWS.

Access the video here:

22 May 2013

PWS Awareness Month. Around the world May is recognised as PWS Awareness Month. We are happy to draw your attention to this video by PWSA-USA Advisory Board Member, Abbott Philson, calling on everyone to help raise awareness about PWS this May.

Access the video here:

15 May 2013

New Insights from Prader-Willi and Williams Syndrome. Lecture by Elisabeth M. Dykens, Ph.D. as part of the University of California Davis M.I.N.D. Institute Distinguished Lecturer Series (June 8, 2011)

This talk discusses the need for phenotypic studies that balance salient psychiatric and medical problems with cognitive, adaptive or personality strengths. It also presents data on the role of development and genetic subtypes in the expression of these disorders. Finally, it discusses new data on the family environment and interplay between phenotypic variability and maternal stress, health and mental health.

You can access it by clicking here and scrolling down to Elisabeth M. Dykens: http://www.ucdmc.ucdavis.edu/mindinstitute/videos/video_dls.html

8 May 2013

Pittsburgh Partnership Psychiatrists’ Primer for PWS (2005). Although not a new resource, this document continues to be a very popular summary of key information about PWS for psychiatrists and psychologists who are new to the syndrome.

You can access it here: http://www.pittsburghpartnership.com/handouts/Pittsburgh%20Partnership%20Psychiatrists%20Primer%20for%20Care%20of%20PWS%20%282%29.pdf

1 May 2013

Following the recent success of PWSAI’s own conference we would like to begin by drawing your attention to the presentations made at the Hyperphagia conference hosted by PWSA USA in November 2012.  This was attended by 102 people, including representatives from 5 pharmaceutical companies and included 22 presentations from worldwide experts on hyperphagia.

9 of the presentations made at this conference are available in full at:  http://www.hyperphagia.org/presentations2012.htm

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