Happy 16th Birthday Jordan

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Jordan recently celebrated his 16th birthday – thanks to all who sent cards and presents!

Fundraising in the Falklands!

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When Jordan’s form teacher Jo Symons left the school to start a new life in the Falklands with husband Mark and son Miles, she started to spread the word about Jordan and the PSF UK! Mandy Ford from Stanley in the Falkland Islands wrote to me explaining that some kids had done a 14 mile walk for us. Caitlin, Kieran and Jessica organised the walk which was across country in miserable conditions but they did it in in 5 hours and raised £160 for the PSF UK – thank you all so much!!!!!!!!!!!!! They were joined by Tasmin, Javiera and Clodagh

Visitors all the way from Chile!

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A teacher called Cindy from Chile and her students found Jordan on the web page when they were researching Proteus syndrome. The class started emailing us as they were very interested in Jordan’s story. Stranger still was that there were coming to the UK, and staying just 7 miles away in Hastings!

Cindy came to visit Jordan with two of her students, bringing letters, photos and gifts from the pupils back home. They continue to take an interest in Jordan’s progress. Thank you to our new friends in Chile!

Jordan visits Joel in hospital

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Jordan and I were delighted to visit Joel, Lisa and Julian in hospital.

We drove up after Jordan finished his first lot of rehab and stayed in a premier inn hotel only a short walk from the hospital. Jordan and Joel played in the hospital play room, played pool, karaoke and computer games too.

We went to dinner with Lisa in the evening whilst dad Julian sat with Joel. We went shopping with them on the Saturday and had coffee and donuts too, a trip to the Bear factory completed our expedition and good fun was had by all. Joel is a real little character and likes to play tricks on the doctors and nurses, like his Sponge Bob door bell that’s squirts out water!

The Band Night

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Huge thanks to Adam Taylor who decided to organise a fundraiser for Jordan following his second amputation.

Thank you also to the following people:

Colin, Paul and Denise Taylor for manning the hectic Raffle stand!
Everyone who donated the amazing raffle prizes

The awesome bands:

Dirty Scarlet
Dean Calm
Tonight We Fly

John Cruttenden from Suspect

Andy Godfrey for the poster design

Graham from the Ultimate Alternative magazine for advertising the event

Janet at Prontaprint for the flyers and posters

Everyone who came and supported the event or those that could not attend but made a donation anyway!

The Atha Bar for the venue

Nigel and Suzy for the PA system

Over £2000 was raised by the event – Jordan is saving the money up as he wants to visit family in Australia.

Updates from the Biesecker Lab at NIH

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It’s been a busy year here at NIH and we have several exciting projects to update the PSF about.

  • We have been invited to submit the proceedings from the Orthopedic Conference that the PSF supported in 2007 to an international orthopedics journal. As many of you know, we have directly applied some of what we learned at that conference to many of our patients. The advance we are most excited about is the use of guided-growth orthopedic hardware (“8-plates”) to reduce the overgrowth of limbs, reducing leg-length discrepancies. We are very grateful to all the patients who donated tissue samples from surgery – these samples allow us to do our research!
  • Dr. Marjorie Lindhurst is one of the people who most patients never meet, but her hard work in our lab is vital to our mission. Recently, Dr. Lindhurst has been working to try to find a way to tell “Proteus” cells apart from “normal” cells. This is essential because we need to be sure that we are doing our research on cells that have Proteus syndrome, not normal cells. This “Proteus signature” will also allow us to make more accurate diagnosese and distinguish Proteus syndrome from other similar conditions. Some of Dr. Lindhurst’s preliminary findings are shown below: The picture on the left shows cells from the cerebriform connective tissue nevus (CCTN) in a Proteus patient, while the picture on the right shows cells from a patch of normal skin from the same patient. You can see how the cells from the CCTN “light up” differently from the normal cells.

  • Finally, we are very excited about a brand-new technology that the generous grant from the PSF has allowed us to use – whole exome sequencing.  When we talk with parents about how we do not yet know which gene causes Proteus syndrome, many of you ask us: “Why can’t you look through all of the genes and find the cause that way?”  We are now able to do exactly that, which is what “whole exome sequencing” means.  Using this new technology, we will look through all the genes of several patients with Proteus syndrome (along with their parents’ genes) and we hope that this will help us find the cause of this condition.  Each test costs about $2500 per person, so the PSF grant is a huge financial help – thank you!


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