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Owl Patrol volunteers wins award
The XP Support Group were the winners of the London region adult section of the Nationwide Voluntary awards. Members of the
public can nominate a group or individual for these awards which organised into TV regions. Trustees Sandra Webb and Chris
Jardine and volunteers Eileen Wheatley & Mae Bernstein collected the award on behalf of the group. The Group received
a plaque and vouchers for �100 for a meal for the volunteers.
The volunteers of Owl Patrol are full of enthusiasm and help to make Owl Patrol be what it has become. This is well deserved
and I know you all join me in congratulating them.
UV Protective clothing & The European Space Agency
Many of you know that we have been working with the European Space Agency to provide UV protective clothing for XP and light
Sensitive children. We regret to advise that the ESA are no longer willing to continue. However several of the partners are
keen to progress the project. As it has now been four years since we started, we would like you to contact us to let us know
that you are still behind us in continuing this project. It is likely that the new project will concentrate on a face mask
and undergarments for younger children. Please let Sandra have your views urgently by telephone 01494-890981, post or e-mail
[email protected]
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News from abroad
FDA fast tracks TN45
AGI Dermatics, the bio-pharmaceutical laboratory that pioneered DNA research for skincare, announced today that Dimericine
(T4N5) has been designated as a Fast Track development program by the U.S. Food & Drug Administration (FDA) for treatment
of solar and ultraviolet photosensitivity in patients with Xeroderma Pigmentosum (XP). Dimericine, also known as T45N5 Liposome
Lotion, is a topical drug developed by AGI currently in clinical trials for treating patients with skin cancers and pre-cancers.
"Dimericine is the result of decades of research into DNA repair and its potential to prevent skin cancer and photodamage
caused by UV radiation," said Daniel Yarosh, Ph.D., President and CEO of AGI Dermatics. "We are optimistic that
this Fast Track designation will accelerate our efforts to bring to market this revolutionary treatment and provide hope for
the thousands of people who suffer from the life-threatening disease XP."
Dimericine uses liposome-encapsulated DNA repair enzymes to restore natural DNA repair in skin damaged by UV light. The
potential benefits for XP patients are protection of their immune systems, reduced frequency of skin cancers and
fewer disfiguring surgeries.
Fast Track programs are designed to facilitate the development and expedite the review of new drugs that are intended
to treat life-threatening conditions and that
demonstrate the potential to address unmet medical needs. It grants accelerated review for all steps of the process,
including the applications related to clinical developments and may reduce the time required to bring the drug to market.
With this designation, the FDA has acknowledged XP as a life threatening disease and has also determined there is no drug
currently marketed for treatment of XP.
For further information see www.agiderm.com
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Old News
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The first meeting of the XP Freunde Mondscheinkinder (Friends of the Moon Children) took place at the Jagdhof Glash�tte Hotel
in Bad Laasphe (Wittgensteinerland, Germany) on 5th/6th November 2006.
First Meeting of the XP Freunde Mondscheinkinder (Friends of the Moon Children) took place at the Jagdhof Glash�tte Hotel
in Bad Laasphe (Wittgensteinerland, Germany) on 5th/6th November 2006 For the first time ever, 10 XP patients and their families
came together near Cologne in Germany to exchange experiences and information. This included one family from England and a
couple from the Netherlands.
The Jagdhof Glash�tte very kindly treated us to a free weekend at their hotel where we were able to leave our everyday
XP worries behind and bring a bit of light into our "darkness".
A delicious barbeque, moonlight carriage rides, beauty treatments or massages, a splash in a rock pool, followed by a
trip to the sauna or a challenging game of skittles rounded off with a cosy evening with good conversation around the fireplace
provided relaxation and fun for young and old alike.
Dr. Mark Berneburg, an XP specialist from the T�bingen Referenz-Zentrum, held an interesting lecture on XP and provided
informative and helpful answers to questions from listeners.
One of the event's highlights was the arrival of Ms. Helga K�hn-Mengel, a member of the German Bundestag who is in charge
of patient matters in Germany.
With health insurances increasingly reluctant to pay for UV protection, everybody is hoping for a change in the law. Ms.
K�hn-Mengel gave assurances that she would include this matter in her agenda - a big step in the right direction.
Report by Moni Prenting on behalf of the German XP Support Group XPFreunde
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XP Office
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