Robert's nominator said:

"Bob has been volunteering with the Pituitary Foundation Ireland Support Group as area coordinator for almost 10 years now.
While he also works full time & supports his family, he also manages to support newly diagnosed patients via phone call, email and via social media platforms.
Bob shares excellent & beneficial information on social media platforms to help patients and raise awareness.
Bob connects patients and collaborates with medical professionals."

This is what Robert told us:

• What’s my Story? 

I am Bob Brady, I am from Ireland, I am married to my wife Breege and we have an 8-year-old Boy named Cormac. 

I was diagnosed with a craniopharyngioma tumour on my Pituitary Gland at the age of 11 in 1991, had tumour & my pituitary gland removed in May 1992, as a result I have a rare pituitary condition called panhypopituitarism. I have to take hormone replacement therapy daily, and see a variety of medical professionals. 

In my twenties and early thirties, I had searched for support groups In Ireland, but couldn’t find any information online. After finding the Pituitary Foundation UK Website and attending an event, I felt encouraged and wanted to offer support to people living with Pituitary Gland conditions in Ireland, I wanted to create an online community to raise awareness, where people could connect, and share stories.

• Why I got involved 

After attending events held by the Ireland Support Group coordinator, I was asked if I would take over the position in 2014.

As previously stated I wanted to offer support and information to people living with pituitary gland conditions in Ireland, I wanted to also raise awareness amongst medical professionals, create an independent website and social media presence. 

As of January 2023, I am also a director with the World Alliance of Pituitary Organizations (WAPO).

During the 9-year period as coordinator I have held Annual Conferences for patients and medical professionals, I have been nominated for volunteer awards and won prestige awards for Healthcare non-profit of the Year 2021-2023.

• What would I like to see happen in the Pituitary Foundation for the next 30 years? 

In the past number of years the Pituitary Foundation has had a number of significant changes, new team members, a brand refresh, new website, new resources and support groups, including new telephones support services.

I would like to see greater awareness amongst GPs and Medical professionals to reduce the diagnosis journey for people living with the rare conditions of the Pituitary Gland. I have no doubt the Pituitary Foundation will continue the amazing support and resources offered well in to the future.

Pauline’s nominators said:

“Despite having her own pituitary/medical issues she has founded and runs the Cushing’s UK Facebook Group. She goes out of her way to support group members. She does it with so much dedication and passion its unbelievable. She will never leave a question unanswered and has been the lifeline for knowledge and support for many people. She personally welcomes every single member, responds to almost every post with fantastic information and links and works tirelessly with many research opportunities and directly with endos to ensure the whole journey of Cushing’s is constantly being improved. Even when she was in hospital for a few months last year she was logged on every day, helping other members of the group despite being incredibly ill herself. She deals with everyone in a patient, supportive, informative manner even when emotions are running high and is always up to date with the latest information.”

This is what Pauline told us:

My pituitary tumour was found by chance but didn’t start producing excess ACTH until 18months later. I was tested & diagnosed with Cushing’s Disease. Although a retired nurse I didn’t know a lot about Cushing’s or Secondary Adrenal Insufficiency. I didn’t get much support from the hospital team so turned to social media for groups. The only ones I found were US based but their health system was so different to ours, so decided to start one for people in the UK. This was July 2016.

I had no idea what would happen or if people were interested, however with a small core of us the group has grown to 2,500 members with another 1000 having been through the group.

I wanted to be able to inform people about Cushing’s & in doing so encourage them to advocate for themselves to get the treatment they deserve. 

I couldn’t do it without the support of my other Admins & several of the leading Endocrinologists.

I was already a member of the PF & as the group began to grow we came under their “umbrella“.

The PF has continued to grow & develop over the years, I hope this continues as the need to educate both medics & the public is essential for all of us dealing with a pituitary condition.

Happy 30^th Birthday Pituitary Foundation!

Peter's nominator said:

"He has battled through 50 years of living with his pituitary diagnosis and has championed the cause in raising awareness in the community and with medical staff for many years. He is always willing to listen to people and has been volunteering on your helpline for a long time now. I have no doubt he has saved lives and improved them for many many people. He is also an amazing brother to me and he deserves recognition for all that he has done and achieved over many, many years through his determination to make things better for people without looking for any reward himself."

This is what Peter told us:

During my childhood, I went to see my doctor almost weekly. By now I was having severe earache, being sick, crying with pain. The doctor told my Mum and I that I had a tumour and would have to have an operation. I cried. I was only fourteen. I was admitted to hospital right away.
After explaining to me what was going to happen, I had all my hair cut, then shaved off. I was beside myself. I can remember asking the nurse, to please, please, just leave a little bit on! My operation was a Craniopharyngioma. It took several hours. I was in hospital for about four weeks. I had gained weight. The weight made me look different. My face and head shape had changed. I was having mood swings and ultra-emotional episodes, crying, wanting to run away, poor self-image, no sense of self-worth.

In September, I went back to my school. The pupils who had been praying for me during earlier on, now took the micky out of me. Poked fun at my head (My hair had fallen out again, as a result of the radiotherapy. I also had diabetes insipidus (now AVP Deficiency) and a build-up of fluid on my head.) Many of the teachers had no time for me at all.

I struggled on.

Within two years of the operation, some of the major issues had settled, others were left unresolved. I now hated school because being bullied made me an outcast. I was also moved down a year, in the hope I would be able to catch up on the work I was struggling with. For me, that was the final straw. I hated it. I’d lost my friends, my peer group, my health, and to some extent, my future. My main problems were emotional / behavioural. I cried a lot. I could lose control altogether. I had panic attacks. Teachers, and other adults did not know how to help. I did not know why they happened.
No one seemed to be able to throw any light on this, until I met a specialist in Leicester. He let me look at some of the scans results and explained the Hypothalamus to me. For me it explained how, a well-behaved child and young man, turned into a sobbing, depressed, sad, grieving teenager with poor self-image. No one had ever told me this before. It made a huge difference to me and my parents. I found this out when I was twenty-three years old! nine years after my operation. 

With eyesight and other health problems, employment was difficult. Over the years I have been a telephonist, receptionist, office clerk, shop assistant, clerical officer and my last job was with social services. One day, I fell at work. I injured my back and have now a spine condition that has prevented me working at all. Basically, I am a liability. Poor eyesight, back problems, health problems etc = unemployment. My eyesight has worsened over the years, and now I am also getting age related problems like osteoporosis! (More tablets.) I have never been married. I have no children! I missed out on a career. Since my parents have died, I have no immediate family in a hundred-mile radius.

I have coped, sometimes in a fashion, on my own and with the help of my friends.

I will have a go and try anything, especially if it involves helping others.

I have counselling qualifications and do voluntary work for a number of agencies locally. So not only do I benefit by doing these things, but others benefit too.

If I had laid down, and done the “Poor Me” act, no one would have wanted to know me. What I have done for many years is, put the “Slap” on (makeup)…for me that is a smile! Put decent clothes on then got out there and had a go!

Depression and lethargy could have ruled my life. I would not let them. Yes, there have been times when I have not been well, and have given up for a short time, licked my wounds, so to speak. But then I get up and try again.

Risa's nominator said:

"Risa is an incredibly gifted writer, athlete and advocate for acromegaly. She has published an incredible book, “The Road Unpaved”, and also completed a cycling trail from Canada to Mexico. Her book is a poignant, candid and touching personal story of her journey with acromegaly, demonstrating incredible resilience and faith as she navigates the emotional and physical highs and lows of the condition while also embarking on a life changing challenge to cycle from Canada to Mexico. She is a true inspiration and she has shown incredible empathy, compassion and support when I’ve reached out to her. I am so thankful to have found her story and even more thankful that she takes the time to respond when I am in need of support"

This is what Risa told us:

• What’s your story? Why did you start doing what you’re doing, how long have you been doing it?

Following a Pituitary tumor and rare disease diagnosis in November 2018, I discovered that information about Pituitary tumors and pituitary related diseases was lacking.  I thought I might bring some attention to it by riding my bike 1,845 miles down the Pacific coast of the US, from Canada to Mexico. Quickly, the medical field and pharmaceutical companies took notice, and I became a voice and a story of hope and inspiration for many.  I went on to write my multi-award-winning book that is bringing hope and inspiration to many, and hopefully awareness as well.

• Why you got involved?

I was appalled at the limited information available to those with rare diagnosis. How could I, or anyone else, make adequate and strategic decisions if we don’t have all the information?  Looking back, had I had the knowledge I have now, I may have made very different decisions for my treatment. My goal is to help bring attention to Pituitary disorders and diseases, earlier diagnosis, and potentially saving lives. In addition, people from around the world began contacting me wanting to be heard and to share their experiences. I truly love that I can acknowledge others’ journeys while also offering hope and inspiration.

• What would you like to see happen in The Pituitary Foundation for next 30 years?

I would love for the Pituitary to be a part of regular annual medical checkups.  I would love the Pituitary to be as common of a topic as is the Thyroid or Diabetes Mellitus is. The Pituitary is the control center of the body after all and it impacts in ways most people don’t even realize.  It’s time for the Pituitary to be front and center! The more we understand the Pituitary the more we can combat its malfunctions.

This year marks our 30^th anniversary and we are so excited to have a year full of celebrations. Since 1994 we have been supporting anyone affected by pituitary conditions and we will continue to be here for future generations.

We’ve changed a lot in those 30 years, starting from a small group of volunteers and medical professionals. Currently, we have 22 support groups, 2,000 members, and last year alone our helplines have answered over 2,400 phone calls. Today, our cause is still as clear and compelling as ever, to improve care and reduce diagnosis time.

We thank everyone who has supported us during the last 30 years. This is as much a tribute to you as it is to us. We’ve got big ambitions for the next 30 years, and we need your support to reach them.

Some of the actions we will take is starting new support groups, creating more information events for you and visiting 30 endocrine clinics, to raise awareness of our work.

There's lots of ways you can get involved in the celebrations:

• Nominate a Pituitary Hero
• Take on a 30 challenge and raise funds
• Become a member

Please Donate

This year marks our 30^th anniversary and we are so excited to have a year full of celebrations. We’ve got big ambitions for the next 30 years, and we need your support to reach them. 

We’re asking everyone in our community to get involved with fundraising. You can get involved in any way you like, but we have some ideas already!

Take on a 30 themed challenge to do 30 things to raise money. Maybe you’re going to knit 30 pairs of socks, do 30 acts of kindness, or run 30 miles! It really doesn’t matter what you do as long as you get involved.

We have some ideas of ways to get involved below. Also take a look at our community page, and see how others are raising funds and awareness.

If you are taking on a challenge, remember to let us know, as we are always happy to support in any way we can. You can email us [email protected], or give our office a call 0117 370 1333.

Below are the people who are taking part in fundraising for our 30th year! Find out about their achievements, and get inspired to take on your own fundraising. If you would like to be featured on this page, please scroll to the bottom of this page where you can find out more.

The following people have kindly donated £30 or more as part of our 30th anniversary appeal: Anna Crown, Deborah Cooper, Alison Milne, Sue Jackson, Phil Rouse, Stafford Lightman, Shirley Davis, Peter Terry, Pamela Shrimpton, Colette Harris, Clive Lingard, Javir Sigh, Vivienne Cox, Jeanette Curran, Ruth Carter, A. J. Wootton, Sharon Smith, Howard Sutton, Andrew Dogherty, Peter Cork, Joanne Megginson, Anne Tombs, Frances Avery, Patricia Bolton, Sheila Hutchinson, Paul Harold Burgan, Michèle Levy, Nich Lake, Tim Greenhill, Michael Crisp, Emma Reilly, Caleb Parker, Simon Hancox, Tony Gamble, Dennis Moxlow, Neale Salt, Ian Warne, Nicholas Jardine, Margaret Matthews, Anne Henderson, David Holmes, Robert Gore, Nicola Davies.

Your anniversaries:

Denise - "This year I'll be celebrating 50 years since my last radiotherapy.  I understand my  life expectation was just 18 months. Currently I've had 47 years..."

Jordan - "I was diagnosed with a pituitary tumour when I was 11 at the end of July 2002; 3 days before the end of year 5 when i was transferred to great Ormond street for treatment. A particular song that I remember singing and dancing to with the nurses was 'Any One Of Us' by Gareth Gates. It was just after he came second on pop idol and i was in love with him. This song means so much because it reminds me of being in my bed with my walkman on, blasting that tune on repeat and the nurses dancing and singing with me, made me smile and laugh and distracted me from what was actually going on. I am 31 now and am well in the routine of living life with a pituitary condition but this memory still sits in my heart like it was yesterday."

James - "I was told I had a pituitary adenoma on 15 December 2016.  After a rollercoaster of emotions, my wife and I went out for a comforting fish and chips dinner at one of our favourite eateries by the harbourside at Eyemouth in the Scottish Borders.  We parked on the quay facing the harbour.  Upon finishing our meal, we came out to find the tide had started to come in and the boats were now sitting higher – this revealed ‘Fear Not’ was the vessel directly in front of our car.  I took this as a reassuring sign…"

Annabel - "My pituitary anniversary is 40 years since I had my operation. Easter 1984 the tumour was removed, just before my o-level exams, so 10 years before the Foundation existed! I became a member early on, although didn't realise at the time how new the charity was. Thanks for all your help over the years."

Paul - "My diagnosis for panhypopituitarism and diabetes insipidus was September 1999. Favourite songs: Morning has broken by Cat Steven (1971) and New York City Boys by Pet Shop Boys (1999)."

Mark - "Music is so personal to me and I can’t remember much with my memory troubles but what song was playing at a particular time really sticks with me. My diagnosis was 3 August 1995 and my operation was 9 August 1995. The song that was playing when I was in hospital that sticks is I'll Be There for You (theme from Friends) by The Rembrandts. I know the lines “When it hasn't been your day, your week, your month, or even your year” and the “I'll be there for you” lines meant a lot with my mother and brother watching over me as much as permissible in Great Ormond Street at the time! And also with The Pituitary Foundation there for me since I was introduced to you in early 1996 by MedicAlert."

Tim - "My pituitary anniversary is 26th March 2000. The music that helped me during this time was Mozart's 'Adagio'. I found it very helpful and calming during that difficult time in my life."

Lisa - "Tumour removed on 15th July 1985. There must be an angel by Eurythmics was my memorable song which I was singing going up in the lift to my op! Live Aid had been on TV the weekend before but I was too nervous to watch it or think about anything! This date reminds me how far I've come, how much I've learnt and how much I've been through medically."

If you would like to feature on this page, then please complete the form below telling us about your fundraising efforts. If you meet our criteria, we will share your name and picture. Alternatively, you can email [email protected].

As part of our 30^th anniversary we asked for nominations from our community to share their pituitary heroes: people who have gone above and beyond for the pituitary community.

We received 70 nominations and our panel of judges then chose our 30 heroes. It was tough to decide as there were many incredible nominees. Our Pituitary Heroes are the people that have given an exceptional contribution to the pituitary community or are working to create a better future. Through this campaign, we want to thank them and celebrate them!

We will be sharing details about each of the 30 heroes throughout the rest of our 30th year. You can read their stories below, or follow us on social media to find out more!

Click on the heroes names to read more about them and their full story.

Regardless of sex, prolactin is a hormone that is present in every body and plays a significant role in producing milk. A prolactinoma is a prolactin-producing tumour on the pituitary gland. This is the most common pituitary condition, and can have life changing impacts on fertility and wellbeing.

Throughout October in 2023, we shined a spotlight on prolactinoma by increasing awareness about the impact of prolactin and prolactinoma, sharing up-to-date information and connect people living with high prolactin levels with experts and one another.

We hosted seven online events for people with prolactinoma and their support networks to learn more about prolactin and prolactinoma. Additionally, we hosted a Prolactinoma Support Group Meeting to exchange experiences and a Q&A session specifically for men with prolactinoma, as their journey often looks different to women. In total, over 130 people attended these events, asked questions and shared their personal stories.

Around 90% of attendees thought the events were good or excellent and increased their knowledge of the subject. We are pleased to have held a session specifically for men with a prolactinoma, as often their experience can be different to others.

On social media we shared information and stories about people living with prolactinoma and these were seen over 88,000 times. The website pages for prolactinoma were also viewed 42% more than a normal month.

If you would like to watch the talks for Pituitary Awareness Month, please visit our YouTube channel.

About Prolactinoma

A prolactinoma is the name given to a prolactin-producing tumour on the pituitary gland. This is a benign tumour, and not a brain tumour or cancer. A prolactinoma causes raised prolactin. This hormone stimulates milk production after childbirth, but is also present in men.

Symptoms vary depending on a person’s sex and can include:

• Loss of periods
• Reduced interest in sex
• Vaginal dryness
• Infertility
• Excess breast milk production
• Difficulty getting an erection
• Headaches
• Visual problems

Once diagnosed through blood tests and scans, a prolactinoma can be treated usually through medication. Surgery can be a treatment method to remove the prolactinoma, although this is less common.

During Pituitary Awareness Month, we shared materials and information about the symptoms, diagnosis and treatments of prolactinoma throughout.

Together, we can make a difference by increasing understanding and support for those affected by prolactin-related conditions within the pituitary community.

A history of campaigning

For over 25 years The Pituitary Foundation has been working to raise awareness and bring about change in policy to improve experiences for pituitary patients and their families.

Foundation staff speak out for pituitary patients in the many rare disease networks we are involved with. To give just a few examples; Clinical Reference Group in England, Welsh Cross Party Group for rare diseases and as a member of the Specialised Health Care Alliance.

The Foundation keeps up to date by making sure we are aware of policy decisions that we should respond to on behalf of pituitary patients.

We follow the activities of government's policy work, NICE, relevant cross party groups, charity sector organisations' e-bulletins, health boards, other endocrine based organisations, and commissioning bodies.

Some campaigns we are particularly proud of include:

Response to the new Rare Disease Framework

On Saturday 9 January 2021, the UK Government published a new UK Rare Diseases Framework. This document sets out the underpinning themes and priorities for the next five years that must be acted upon if the lives of people with rare diseases are to improve.

NICE Consultations

The Pituitary Foundation registered as a Stakeholder with NICE (National Institute for Health and Care Excellence) in 2017. As a registered stakeholder, we are included on the list of stakeholders when NICE guidelines are being developed. As stakeholders, we are notified when current Guidelines are to be updated, and invited to submit comments for consideration in the updated Guidelines.

Since 2017, as an organisation we have submitted comments in relation to topics which we consider to be relevant to our pituitary community.

THINK - Adrenal Insufficiency

In 2017 we worked with University Hospitals Bristol NHS Foundation Trust, to encourage all hospitals to have a protocol in place for managing patients with adrenal insufficiency.

Know your insipidus from your mellitus.

Our summer 2016 awareness campaign highlighted the importance of desmopressin being a lifesaving medication, and how it is vital not to confuse diabetes insipidus with diabetes mellitus because they have different causes and very different treatments.

Adrenal crisis e-learning module campaign.

In 2016 our spring campaign increased the use of the adrenal crisis e-learning module by ambulance staff, which was developed by North West England Ambulance Service.

Save Our Loos.

Leads to isolation due to patients having to avoid leaving the house. The Foundation ran a campaign during 2015 where supporters wrote to their local councillor, signed petitions, and spread awareness of DI.