Pituitary Foundation Research

[trys]

I was wondering if there was something we could do to encourage the Pituitary Foundation to include research into their aims as a charity.

It may be a combination of funding, expertise and other resource, but given the support of people that are looking for answers there may well be a queue of people willing to spare their time helping with the research.

I was fortunate enough to be asked to help as a volunteer as an acromegaly patient, the results of which should give an insight on cushings patients. I'm really glad I did it, not just from the stance of helping, but also I found the conversations with the doctors very enriching.

I was quite amazed that the money that we were raising for the Pituitary Foundation wasn't going towards any research. It would be good to find out if in some way it could, even if it was just initially in coordinating or in reporting the research.

[Paul]

Hi Trys,

When I put up a posting on the Foundation Forum in order to do some research, I was warned by the foundation and told that I would be banned if I did so again. I did however in that time manage to proove a link between pituitary tumours, auto-immune diseases, friedricks attaxia amd addison's.

The chances of everyone having the same symptoms they reported equated to the number of people on the planet multiplied by 6.2.

Whilst the research I did was not scientific, I handed the information onto a few endo teams who have since taken it up. It has also changed the way they treat pituitary conditions in Ireland.

Here would be as good a place as any in order to carry out research. Should any research body require it, or anyone interested in doing research, I would be more than happy to open up a dedicated thread for research.

Hope this helps

Paul

[trys]

Imagine how brilliant it would be though if we could encourage the Pituitary Foundation to have some input into pituitary research. Is there something we can do to help them?

[Paul]

Hi Trys,

The simple answer to that is "YES"

The best thing we can do is ensure that they know where we are and more to the point - are not coming from. The Pituitary Foundation have our support 100% and if they need any help or assistance, all they have to do is ask and I, along with most members here will do our utmost to facilitate them.

Whilest there may be some perceived impression that there are some personality clashes or oppposing points of view, this has nothing to do with either the Pituitary Foundation or Pituitary Chat. We both (hopefully) are putting the interests of those affected by pituitary conditions first and foremost. There is no second reason for our existance.

btw, I tried to ban myself for waffling and spamming the forum but the software won't let me. I think I should have a look at an "ignore user" option!

Regards,

Paul

[Paul Clarke]

I have been actively looking for research groups that we can help and would encourage our members to do likewise. Other charities that are in the process of being erstablished cover auto-immune disorders & lupus / MS / Fredericks Attaxia and ME.

Thanks,

Paul