For Volunteers Week, we’re celebrating all the amazing volunteers here at The Pituitary Foundation. So, say hello to Jess. 

Jess has been involved with The Pituitary Foundation as a volunteer since 2017, taking the reins of Fundraising Group Leader after undertaking previous fundraising events such as, The Fun Run, Snowdon and Ben Nevis back in 2015.  Jess is now launching our new Prolactinoma online support group.

After being diagnosed with Prolactinoma at the age of 18, she sought out the Pituitary Foundation after noticing one of our flyers after a hospital appointment.  

“Once I was diagnosed, I sort of had a look online and to be honest, when the doctor told me I had a small brain tumour I did go into panic, because I didn’t know a lot about it. It wasn’t until I was referred to my endocrinology specialist, Nicki, that she helped me understand it a bit more and what was happening. 

I then found a flyer for the Pituitary Foundation in the foyer of the hospital, and I got in touch with them and looked on their website, found out a bit more about them and it wasn’t until three years later that I actually met with Jay [our Head of Fundraising].” 

To Jess the important thing is to raise awareness and using a negative experience for something positive, that’s when she started fundraising. 

“We sat down and had a meeting because I just wanted to try and help out and I didn’t really know how. I knew I wanted to start fundraising but there wasn’t a lot online. 

So, I just wanted to contact you and reach out and see what you do and how I can help.” 

Almost a decade on, Jess still continues her support by getting involved in our fundraisers, panel talks, online events and continuing to share her story. With her latest endeavour in setting up an online support group for those with Prolactinoma with our Volunteers, Campaigns and Events leader, Kim. Launching on the 7th June. 

“The prolactinoma group is more focused on specifically my condition, so it will be really quite good. Just being able to meet people that are the same as me. 

“But it’s been a long process of where I was to where I am now. So, I’m just trying to use It in a positive way and do something good from it, try and fundraise and just raise as much awareness as possible.” 

Jess’s passion for helping the community is what keeps her joining in on long treks up Britain’s biggest mountains and skydives. Her pituitary condition has never hold her back from doing what she enjoys most.  

“I get a sense of reward when people reach out to me and say they have the same condition and that is nice to read my story and see what I went through compared to where I am now.”  

“I love doing fundraising, but it’s hard sometimes with work and I’m always so busy and go away quite a lot, so it’s quite difficult to balance but it is just something I really enjoy. 

I love helping other people and that’s the main reason I wanted to be a volunteer in the first place. You get to meet lots of people along the way, and you get to do some really fun stuff that nobody else would probably want to do.” 

In the many years Jess has been participating in fundraising events with us, she has many highlights of events that aren’t everyone’s cup of tea to fancy gala dinners.  

“When we did Snowden that was amazing. There was about 50 of us and we raised I think close to £25,000. There were people of all ages, all abilities and some with the same condition as me or some just friends and family of others in the community. 

The same year was the 25th anniversary gala dinner and I raised quite a lot of money in a really fun few months and we all raised loads of money on the night of the auction at the gala. It was a really good few months of solid fundraising.” 

Fundraising is important to every charity; it raises money that is essential to ensure we can fund our services and raises awareness, and that’s what matters to Jess’ time here as a volunteer.  

“Money is obviously important because that’s what helps the charity continue but raising awareness is equally as important because so many people don’t know about these conditions. 

Before I was diagnosed, I’d never heard of Prolactinoma and neither had my family. There was nothing in the news about it. 

We are more understanding of people’s conditions but there is also the fact that what I have is a totally invisible illness. You can’t see it, it doesn’t make me look any different, it’s just a small tumour, but it affects my tiredness, my hormones, my mood swings. I have debilitating headaches, bad nausea and sickness and leaking of the breast. 

It’s one small thing in a tiny part of your brain but when you look at the human body and think about is as invisible, it’s not that invisible. 

Raising awareness and just wanting people to understand more about it is the biggest goal for me.”

Interested in Volunteering? 

If you’re reading this and have become intrigued by the idea of volunteering with us, we invite you to sign up for our mailing list. By doing so, you’ll be the first to receive updates about new volunteering opportunities at The Pituitary Foundation. We would be thrilled to welcome you to our amazing team!