AMYANDFRIENDS.ORG

cockaynesyndrome.org

Resources and Support | Share and Care Network

http://cockaynesyndrome.org/about-cs/resources-and-support

Board Members & Program Directors. Board Members & Program Directors. Cockayne Syndrome Resources and Support. Links and information about support organizations. Give Kids The World. Make A Wish Foundation. National Institute of Health. University of Maryland Brain & Tissue Bank. 2016 Share and Care Network. Website Developed by Wicked Design.

forthomaslaurie.org.uk

What is Cockayne Syndrome

http://forthomaslaurie.org.uk/What-is-Cockayne-Syndrome

What is Cockayne Syndrome (CS)? Children with CS who show signs at birth and are classed as having 'severe' CS have an average life span of age 4/5. Children who have 'moderate' CS and show symptoms around age 12 months, slower to develop skills have an average life span of age 9/10. Children who have 'milder' CS - they are able to walk/talk and develop symptoms at a later stage usually have a lifespan into their second decade. Social, jovial personalities. Short stature, height. Sleeping with eyes open.

rdstaging.geneticalliance.uk

Supporters

http://rdstaging.geneticalliance.uk/supporters

What is a rare disease? Rare Disease UK (RDUK) has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations. For more information and to join RDUK please click here. Our industry supporters for 2016 are: Aegerion, Alexion, Amgen, Amicus Therapeutics, Bio Marin, Biogen, Chiesi, CSL Behring, Genzyme, GlaxoSmithKline, Healx, Novartis, Pfizer, PTC Therapeutics, Raptor, Roche, Shire, Sigma-Tau Rare Disease, SOBI, UCB and Vertex. CDH-UK (Congenita...

sharron-harrysstory.blogspot.com

Atypical Progeria Syndrome Harry's story : August 2015

http://sharron-harrysstory.blogspot.com/2015_08_01_archive.html

Atypical Progeria Syndrome Harry's story. Monday, 3 August 2015. On the 4th July, we welcomed Zeus, a border terrier puppy for Harry. Zeus has settled well and is an honorary member of Team Crowther. They have a great friendship as you can see from the photo. They love to snooze together :). Subscribe to: Posts (Atom). Meet Harry's friends also with Progeria. Http:/ www.bjorn.progeria.nu/. Http:/ www.progeria.be. Thank you to Ashley Scrace for this great article. Harry at 275.3 metres. Siblings.Emma,...

sharron-harrysstory.blogspot.com

Atypical Progeria Syndrome Harry's story : October 2014

http://sharron-harrysstory.blogspot.com/2014_10_01_archive.html

Atypical Progeria Syndrome Harry's story. Thursday, 2 October 2014. It's not goodbye, it's see you again soon". Harry giving Claudia a kiss and a cuddle the night before she flew home to Portugal. These cuddles and kisses are so important to the children. It's not goodbye it's see you again soon. Wednesday, 1 October 2014. International Progeria Reunion - Istanbul, Turkey September 2014. Harry has been lucky enough to attend another reunion this year as guests of Gamze and the President of Turkey. Http:/...

sharron-harrysstory.blogspot.com

Atypical Progeria Syndrome Harry's story : November 2013

http://sharron-harrysstory.blogspot.com/2013_11_01_archive.html

Atypical Progeria Syndrome Harry's story. Friday, 29 November 2013. From Monday 2nd December for 2 weeks Harry will begin his work experience placement with ao.com. This is a great opportunity for Harry to go into the workplace and discover more about the big wide world of a highly successful business. Thank you in advance to everyone who will be involved in showing Harry 'the ropes' and I cant wait to hear all about his adventures. Subscribe to: Posts (Atom). Meet Harry's friends also with Progeria.

sharron-harrysstory.blogspot.com

Atypical Progeria Syndrome Harry's story : February 2015

http://sharron-harrysstory.blogspot.com/2015_02_01_archive.html

Atypical Progeria Syndrome Harry's story. Saturday, 28 February 2015. We can not believe that in just a few months Harry will sit his final exams in school, ready for the next phase sixth form/college. Where has the time gone. It has literally flown by. In April Harry will be attending his school prom. We already have 'the suit' and Harry has a date. Photo from Harry's Prom :). For now, thank you everyone for following this blog and we will be back soon. xx. Subscribe to: Posts (Atom). Http:/ www.the...

bluepurpleandscarlett.com

dreaming of heaven Archives - Art Is Medicine

http://bluepurpleandscarlett.com/tag/dreaming-of-heaven

Tag: dreaming of heaven. 8220;The Seraph” Mixed-Media on Cardboard. May 17, 2015. December 15, 2015. The background texture was made my stenciling over a large piece of lace…. Heavy gel medium mixed into the paint for more texture…. If you turn it upside down…. Applied directly to the board with the gel medium…. The long strands of her hair repeat the shape of a wing…. Thanks for looking at my art, please visit my FB page. For daily art postings. Scarlett. Shop for CS Research. I’ve Been Featured In.

bluepurpleandscarlett.com

heavy gel medium Archives - Art Is Medicine

http://bluepurpleandscarlett.com/tag/heavy-gel-medium

Tag: heavy gel medium. June 13, 2015. June 19, 2015. Hand Made Gift Ideas. These tiny 2 inch square canvases are perfect for painting miniature Monet waterlilies. First, I painted them with clear gesso and pulled out some Monet books for inspiration…. My technique was simple:. 1 Stipple background in soft colors with a stencil brush. (made transparent by mixing acrylic with gel medium). 2 Fingerpaint water lilies in greens. (large lilies with the pad of my finger, smaller ones with tip). 8220;The Seraph&...

bluepurpleandscarlett.com

Painting Archives - Art Is Medicine

http://bluepurpleandscarlett.com/category/painting

July 20, 2016. July 20, 2016. I’m still experimenting with glass painting. These prints were created by painting quickly onto a piece of glass with acrylic paint, and then printing the image onto Bristol vellum. The first one wound up looking a bit scant so I tried it again, brushing the paint more thickly onto the glass. Here’s the second one, framed. Thanks for stopping by to look at my art! More Glass Printing with Acrylics. April 26, 2016. April 26, 2016. Thanks for stopping by and looking at my art!