dauventide update

[kades]

the following link :

biotuesdays.com/2012/10/23/... link

has had a positive update on the dauventide trials, i have put a blog to ask them when it will be available in the uk and wait a response. I thought i would share the link with you all x

[teena2]

Hi Kades,

I have read the article with great interest. Unfortunately it is too late for us because Chris died in June of this year. The progress sounds really good at first glance, BUT, it is, as I understand it, to be geared up for PSP sufferers IN THE EARLY STAGES OF THE DISEASE. Since the diagnosis is often not until quite well on into the disease how will it benefit our sufferers? Our personal experience of early diagnosis was that once we sought help for Chris he was diagnosed quite rapidly, but being wise in hindsight he had already been suffering from PSP for some years- we just didn't realize that he needed help from a neurologist for a diagnosis. On looking back over the years the first signs of a problem with Chris were changes in personality that neither he nor I could explain. This was more than 4-6 years before diagnosis, the second and third signs which we again didn't realize could be connected to a brain cell disorder was permanent dizziness and problems with vision.

I know things are improving with getting the diagnosis right but it seems to me that this needs to be worked on alongside finding treatment. I wonder if provision is being made for this?

Does anyone know any more about this progress?

Teena2

[kades]

hi teena,

sorry to hear about chris passing, my dad was only diagnosed in jan 2012 he probably had it 2/3 yrs prior he has got the slow version as there is an agressive form. i have had an email back of some doc who is dealing with the dauventide and tests are still ongoing and they cant say yet when it will be available or if it at all works fingers crossed thats all we can do thanks x

[jillannf6]

HI SORRY TOO ABOUT CHRIS PASSING

I HAVE PSP AND HTINK I HAV ETHE SLOW TYPE TOO - I WAS SO RELIEVED TO GE TA DIAGNOSIS AND REALISED THAT I MIGHT NOT HAVE LONG LEFT ON HTSI PLANET BUT I AM SIILL HERE UPRIIGHT APART FROM WHEN I FALL OVER

LOL jiLL

[marytea13]

But what is the update onf this drug dauventide? It seems to me it will not be available in may in countries for some years but is getting people all excieted that it wil be & will help.I'm doubting tomas'. there's supponsed to be some 'announcement' next month. Thanks for posting the link on which nothing can be read unless u sign up for it. but I did sign up!

[kades]

Hi mary tea, well they are supposed to be like you say making an anouncement the end of jan 2013 so all i can say is fingers crossed x

[marytea13]

Dear Ms. Bosman:

Your inquiry about Davunetide was referred to me for a response.

Like you, we hope that the outcome of the clinical trial will be robustly positive and will be sufficient for us to gain regulatory approval.

We have not yet determined what the process for approval in Australia would look like, so unfortunately I cannot give you any particular estimate as to when Davunetide may be approved in Australia. That said, having conducted the study in Australia, we certainly want to make it available there.

Sincerely yours,

Michael Gold, MD

Chief Medical Officer

Allon Therapeutics.

This is an email I received last week. Hope it is of value to some of u I think he answered in response to my blog on biotuesdays. marytea13 In Perth Western Australia

[kades in reply to marytea13]

hi mary tea, do you know if it is going to be available in uk i contacted allon therapeutics i got an email similar they dont know yet?

[marytea13 in reply to kades]

No sorry dont know anythiing about UK this biotuesdays seems the one to watch but whatever happens its all up to govenment approval for this drug to be available then your neurologists decision to prescribe it for you! Thats what I understand will happen. marytea

[kades]

yes thats right i have spoke to my dads psp specialist who said as soon as they know anything my dad will be told xx