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The IPWSO BlogNews, views, thoughts from the International PWS Organisation.
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The IPWSO Blog | ipwso.blogspot.com Reviews
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News, views, thoughts from the International PWS Organisation.
ipwso.blogspot.com
The IPWSO Blog: March 2014
https://ipwso.blogspot.com/2014_03_01_archive.html
News, views, thoughts from the International PWS Organisation. Wednesday, March 19, 2014. So how do you earn a living? I recently subjected myself to the necessary discomfort associated with visiting a dentist and was happy to hear that I had no significant new dental issues. However, finding no new problems for which to propose costly solutions, the dentist instead suggested I replace two existing fillings using more modern materials. I was taken aback. None of your business. I don't earn any. I have en...
The IPWSO Blog: April 2014
https://ipwso.blogspot.com/2014_04_01_archive.html
News, views, thoughts from the International PWS Organisation. Tuesday, April 29, 2014. Danish Group Homes for PWS. Contributed by Dorica Dan, Romania. EURORDIS, the European Organisation for Rare Diseases, has visited several Danish Group Homes for PWS last October. The visit occurred in the scope of the Joint-Action for Rare Diseases from the European Union Committee of Experts on Rare Diseases (EUCERD), where EURORDIS leads a work package on Specialised Social Services and Social Policies. In all hou...
The IPWSO Blog: May 2014
https://ipwso.blogspot.com/2014_05_01_archive.html
News, views, thoughts from the International PWS Organisation. Monday, May 19, 2014. Somehow, a hand-made card beats the bought variety any day of the week. Every year on my birthday, or Mother's Day, I get one from my daughter. It's generally the same style with lots of cut-outs and hearts and so on and not much has changed over the many years I've collected them. On the other hand, when things go right, when systems work and medicines help, then all our lives can be equally 'fantastic'! It was at that ...
The IPWSO Blog: June 2015
https://ipwso.blogspot.com/2015_06_01_archive.html
News, views, thoughts from the International PWS Organisation. Monday, June 15, 2015. Not the most exciting topic for a blog, I know, but it is becoming more and more often described and reported in PWS, especially in adults and often found in the older generation. And why is this something that we are now much more aware of and why did we not talk about this just a few years ago? I was phoned, but slept through the call and it wasn't until 5.30am that I learned of the previous night's happenings. 8220;T...
The IPWSO Blog: My daughter and PWS
https://ipwso.blogspot.com/2015/07/my-daughter-and-pws_9.html
News, views, thoughts from the International PWS Organisation. Thursday, July 9, 2015. My daughter and PWS. Last year when my then 3-year-old daughter was attending a preschool her teacher stopped me one day to report an observation. My daughter, she reported, was remarkably understanding and relaxed around a particular boy in her class. This boy had autism. He was nonverbal, 3 years older than my daughter, much bigger than her, and frequently had meltdowns in class. That's right - his 90th! Apparently I...
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The Lodger and Us: May 2015
http://thelodgerandus.blogspot.com/2015_05_01_archive.html
The Lodger and Us. Our life with our son The Lodger, who has Prader-Willi Syndrome. Friday, 22 May 2015. The Lodger stood unaided for 49 seconds yesterday! In the world of most 2.5 year olds, this would not be big news but in The Lodgers world this is 'Hold the headline' news! We sneak physiotherapy into every activity, from practising standing in the back of Daddy's parked jeep to introducing new toys on a low table so he has to stand. As tough as daily physiotherapy is, it certainly pays off! The Lodge...
The Lodger and Us: January 2015
http://thelodgerandus.blogspot.com/2015_01_01_archive.html
The Lodger and Us. Our life with our son The Lodger, who has Prader-Willi Syndrome. Saturday, 31 January 2015. This morning I woke up in a panic. I had one of those dreams that seemed so very realistic that I thought it was happening right at that moment. The Lodger was given an empty selection box with the task of completing a treasure hunt to fill it up with all its chocolate goods! Somewhere in the dream was the Easter Bunny without the PWS memo! Sometimes I think Prader-Willi will get the better of m...
A Drake's Progress: Appointments
http://adrakesprogress.blogspot.com/2015/05/appointments.html
Saturday, 16 May 2015. This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers. These are the appointments you have when you have a Prader-Willi person. Simple tem...
A Drake's Progress: Shame
http://adrakesprogress.blogspot.com/2015/05/shame.html
Sunday, 3 May 2015. My last blog post. Was about how my daughter, previously P.E. phobic, has recently started attending a Saturday morning disabled sports club. Last week, she didn’t go, however. The entire family overslept. There was no chance of getting her to the club in time to catch the minibus which was taking the kids to the swimming pool. She was disappointed, and her anxiety levels were starting to rise, as they usually do when plans are changed unexpectedly. Labels: Belle and Sebastian. Dark M...
A Drake's Progress: May 2015
http://adrakesprogress.blogspot.com/2015_05_01_archive.html
Sunday, 17 May 2015. This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers. What I haven’t said enough about is love. I don’t like who I used to be. I know what ...
The Lodger and Us: November 2014
http://thelodgerandus.blogspot.com/2014_11_01_archive.html
The Lodger and Us. Our life with our son The Lodger, who has Prader-Willi Syndrome. Saturday, 8 November 2014. Just smile and say its nice to meet you! 99% of people greet The Lodger like he's just any other kid- smile, joke, play etc., but then there's that 1%. The 1% of people I dread to see. O isn't his life going to be tough! O well that's your life over! Challenging times ahead for both you of.". The list goes on. I walked away fast! I'd love to add-. As a parent of someone with special, or as I lik...
A Drake's Progress: March 2015
http://adrakesprogress.blogspot.com/2015_03_01_archive.html
Sunday, 22 March 2015. The things we say shape our children. Our verbal interactions with them mould their personalities, inspire them, help them as they learn how to think, how to act, and how to be. What would Einstein have achieved if his mum hadn’t regularly used the phrase: “Well, it’s all relative, isn’t it”? What would have happened to Martin Luther King if his ma hadn’t reassured him after a restless night by saying: “What you’ve had there, my boy, is a dream”? Where Peaceful Waters Flow. The mes...
A Drake's Progress: January 2015
http://adrakesprogress.blogspot.com/2015_01_01_archive.html
Friday, 30 January 2015. You might think life is tough for a child with Prader-Willi Syndrome. There’s the hunger, the anxiety, the learning difficulties, and all the rest of the blah blah blah. There’s also the poor circulation, giving rise in my PWS daughter’s case to really cold hands and feet. But I really don’t see what she’s got to complain about. She gets to wear cosy thermal socks. Life of bleedin’ Riley, I tell you. Song is Eels - To Lick Your Boots. Labels: cold hands and feet. So we arrived, w...
A Drake's Progress: Genetics
http://adrakesprogress.blogspot.com/2015/05/genetics.html
Monday, 11 May 2015. This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers. Egg and sperm cells normally contain just 23 chromosomes, so that they join up in con...
A Drake's Progress: November 2014
http://adrakesprogress.blogspot.com/2014_11_01_archive.html
Sunday, 23 November 2014. I came up with a new non-sweary swear today. It was a tweak of Sylvester the cat’s “Sufferin’ succotash”. “Perseveratin’ balderdash! 8221; hasn’t quite got the same ring to it, but saying it to myself in a lispy cartoon moggy voice possibly saved my sanity (although if anyone had overheard they would have thought otherwise). 8221; was high up in that week's Top Five of her repetitive sayings. Over the months, this morphed into “Do I grind my teeth? A few weeks ago, I broke my ru...
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(IPW) Infinite Precision Works
IPW) Infinite Precision Works. Thursday, December 12, 2013. Past few months Parts and Projects. Wednesday, August 22, 2012. CNC Lathe Purchased at the Beginning of 2012! IPW) is going through a lot of changes in Mid 2012! But we still have new and exciting parts to share with all of you. Please let us know what you think! Monday, April 2, 2012. Here are some parts that have been delivered in the past month or so! Monday, July 11, 2011. July 7, 2011 Delivery. Saturday, June 25, 2011.
IP w sieci, czyli nowe technologie i Internet okiem prawnika
Z ustawy znika „trzykrotność stosownego wynagrodzenia” – co z zasądzonymi już odszkodowaniami? Emsp;Tagi: autorskie prawa majątkowe. Identyfikacja sprawcy w internecie. Naruszenie prawa w internecie. Wiarygodne zawiadomienie Anno Domini 2015. Emsp;Tagi: art. 14 uśude. Ustawa o świadczeniu usług drogą elektroniczną. Po prawie 13 latach obowiązywania ustawy o świadczeniu usług drogą elektroniczną. Prawa autorskie w zamówieniach publicznych. Emsp;Tagi: EuroZamowienia.pl. Postępowania takie są często post...
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SMILE! :D | 2R7' 12 IPW Group
2R7' 12 IPW Group. Miss Wang’s feedback on FOI Gloves website:. Thanks for the script. Looking forward to your presentation! Some feedback for your website/blog:. Http:/ foigloves.wordpress.com/. It is currently looking good, you just need some minor touches. Try to put some pictures in between the headings of different texts to make it less wordy. Give a brief summary on the survey. Cite the links of the photos used as they are from the internet. All the best,. Comments : Leave a Comment. For this year,...
The IPWSO Blog
News, views, thoughts from the International PWS Organisation. Friday, March 30, 2018. Body Mass Index in Adults with Prader-Willi Syndrome. Contributed by Susanne Blichfeldt, Georgina Loughnan, Jackie Waters. IPWSO. Https:/ www.nhs.uk/Livewell/loseweight/Pages/BodyMassIndex.aspx. BMI is divided into a number of ranges. Below 18.5 – underweight. 185 – 24.9 – healthy weight. 25 – 29.9 – overweight. 30 – 39.9 – obese. 40 or above – severely obese. How might BMI be different for people with PWS? Georgina Lo...
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