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Will you tell your story so that you can help others?

Occasionally, we will get requests from journalists looking to talk to folks to tell their story or to fit in with an item currently in the news. The Pituitary Foundation strives to raise awareness about the pituitary journey and we might be able to turn some of these requests into awareness.

Therefore, we are calling out to our community to recruit volunteers with the courage to tell their stories in the media: radio, print, web and, very occasionally, on television.

Would you feel comfortable telling your story?

If you’d like more information, please email helpline@pituitary.org.uk and we’ll provide you with an explanation of what might be asked of you. Rest assured, you can choose what you wish to do (for instance, if you don’t want to do radio or telly, that’s fine, we wouldn’t approach you for those " or if you’d rather not include offer a journalist a photo, we wouldn’t request that either).

This is an excellent way for us to work as a team to tell the pituitary story and raise the profile of The Pituitary Foundation!

Points to ponder…  Most media outlets want ‘exclusive’ stories.  This means, once a story is told in print or through another medium, other writers and journalists will not wish to retell the story. Therefore, this is a ‘one-off’ volunteer opportunity. If you have told your story in a newspaper or magazine, it is unlikely a journalist will wish to retell it. Also, if you come forward and your story is told, The Foundation will not contact you about another opportunity. Further, once a volunteer comes forward to tell their story, it is possible that some time can pass before we are approached by a writer who we can match to your journey. Just things to think about should you consider contacting us for further information.
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The Pituitary Foundation will hold its 5th Regional Conference at the Doubletree Hilton in Cambridge on Saturday, 30th October 2010.  The day will start at 10:00 a.m. with registration and time to chat with the programme beginning at 11:00.  We have another excellent conference planned with expert speakers and plenty of time to meet and talk with other delegates.  Further, we are pleased to provide this conference at a beautiful location right on the River Cam.

Please register early.  We are expecting this conference to be fully booked, so act now to avoid disappointment.

We would like to thank Dr. Mark Gurnell and his team at Addenbrooke’s Hospital, Prof. Marta Korbonits and the Cambridge Local Support Group for their time and support.

You can download the programme, registration form and travel information below. 

We hope to see you there!

Have a fun day out and get walking with us to show your support on Saturday, 18th September 2010 along the Strawberry Line Heritage Trail in North Somerset.

The Strawberry Line Walk is an annual event for The Pituitary Foundation and this year it will mark the official start Pituitary Awareness Week, from 18^th to 25^th September 2010. 

Walk with us along the six mile trail from Yatton to Winscombe, taking in some beautiful scenery along the way. Everyone can join in, the route is flat and a good surface and is suitable for wheelchairs and pushchairs.

We ask that all participants pledge to raise £25.00 (more the merrier!) via sponsorship (or personal donation) in aid of The Pituitary Foundation. Children under 16 are welcome but must be accompanied by an adult. Once registered, you will receive an Information Pack with sponsorship forms and a complimentary Pituitary Foundation T-shirt.

More information and how to register

For more information about the Strawberry Line Walk 2010 please click here: Strawberry Line 2010 Information.pdf or please feel free to contact Menai, Fundraising Manager, on fundraising@pituitary.org.uk or 0845 450 0376 (extension Fundraising).

To enter the Strawberry Line Walk 2010, please complete a Strawberry Line Registration form downloadable here Strawberry Line Walk Registration Form 2010.pdf and return it to The Pituitary Foundation by Thursday, 2 September 2010 by fax, post or email.

June 2010

Do you take DDAVP Melts?

A company is looking for people, who have Cranial Diabetes Insipidus and who take the DDAVP Melt, to take part in case studies.

The aim of the CDI patient case studies will be to understand their concerns, views and anything they may wish to share about managing their condition and medication.  With a specific focus on a patient who has switched medication to the Melt and how they managed that change.

Do you take Norprolac?

The aim of the Norprolac case studies will really be to understand the patients who are taking this drug, and their views about Hyperprolactinaemia and their medication.

The case studies will take about half an hour to an hour telephone conversation with patients or, if you’d prefer, emailed questions and you can write back to the researchers. 

As a thank you to the patient, you’ll be sent a £25 M&S voucher in recognition of your time.

If you are willing to take part in these studies and fit the criteria above, please contact Pat on 0845 450 0376 ext 3, or pat@pituitary.org.uk

The Pituitary Foundation has recently introduced online membership, offering you an easier and faster way to become a member. 

To welcome you to The Pituitary Foundation, we are offering, for a limited time, a free gift with membership.  Individual membership costs £15.00 for a full year, which is only £1.25 a month!  Other rates such as life membership, family and concessionary rates are available.

If you sign up to be a subscribed member, you will receive a 'bag for life' with The Pituitary Foundation's name and logo on the side. Our bag for life comes in a dark green colour, it is made of good quality robust material, both light and portable, offering plenty of space.  You can reuse your bag for life, time and again, and best of all you will be raising awareness of The Pituitary Foundation!

As a member you will also receive other exclusive benefits such as a welcome pack, membership card, our Pituitary Life newsletter three times a year and reduced fees to our regional conferences. 

Membership is open to anyone with an interest in pituitary disorders, including patients, their relatives, friends and carers, and medical professionals, including GPs and endocrine specialists.

Click on the ‘Become a Member’ icon at the top of this page to find out more and join today!

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Pilllipp Teufel, a medical student at the Neurosurgical Department of the Eberhard Karls University, Tübingen (Germany) , in collaboration with advisors Dr. Tsambika Psaras and Dr. Monika Milian for his graduation, have developed a questionnaire which they hope will serve as an indicator of quality of life for Cushing’s Disease patients.  To improve their questionnaire - and to find out the really significant questions which can be used as quality of life indicators, they need as many Cushing disease patients to take part in the Questionnaire as possible.   

They have invited all Cushing’s patients who currently have the disease (or those who present with “active disease”, in other words, not those as yet to be diagnosed or those who have been “cured”) to click on the below link and answer the questions.  Again, please only Cushing’s patients with current symptoms.

If you have Cushing’s and can assist with this project, they would be most grateful and it would be an excellent way to better understand the journey of a patient with this condition. Please click here to go to the Questionnaire.