Category: Personal Stories

Case Study Volunteer with The Brain Tumour Charity

As a Case Study Volunteer my duties include:

  • Administer The Brain Tumour  Charity’s Outlook inbox for those wanting to share their story and set up interviews for the Case Study Lead.
  • Conduct research and contact potential story leads found on social media platforms.
  • Support the Case Study Lead with copywriting and uploading stories to the internal database and external website.

Below you will find links to the stories  submitted through the ‘share your story’  submission form found on The Brain Tumour Charity’s website. After receiving story submissions, I contact the person to arrange for them to speak with Jude, the Case Study Lead. Jude conducts the interviews and publish’s the stories onto The Brain Tumour Charity’s website. 

To read more about the brain tumour stories shared with Jude and I here at The Brain Tumour Charity, please click on the button(s) below 👇🏻

Niamh Rose Mulheron's story
Natalie Power's story
Lynn Chitty's story
Ian Boyd's story
Jennifer Bradshaw's story
Robyn Towns story
Tracy Andrew-Williams story
Ian Cutts story
Matthew Gibson-Smith's story

The Brain Tumour Charity takes part in The London Landmarks Half Marathon 2022

Gallery featured below: On 4 April 2022 I volunteered as a Photographer with The Brain Tumour Charity to take photos of The Brain Tumour Charity participants at The London Landmarks Half Marathon. I was beyond excited for this opportunity, because not only do I have a close connection to this cause, but I as well highly enjoy taking photos.  

The London Landmarks Half Marathon consisted of participants raising money for their preferred charity organisation – over 300 charities participated. The Brain Tumour Charity had 40 participants and they managed to  raise  £103,000 for the event and for The Brain Tumour Charity. 

I do hope that you enjoy the images below in which I was able to capture at the London Landmarks Half Marathon with the lens of my camera. If you would like to view a particular image, please click on the image and the image will expand – and please let me know what you think in the comments section.

Journo Jess Photography

Journo Jess participates in bucket collection for The Brain Tumour Charity

Let's find a cure!

I was contacted by a Brain Tumour Charity representative about a volunteer opportunity – to collect donations with The Brain Tumour Charity for the David Capel memorial cricket match. David Capel was a Cricketeer legend who passed away from a brain tumour in September 2020. 

The Brain Tumour Charity says, “we are dedicated to accelerating the  progress of how brain tumours are diagnosed, cared for, treated, and ultimately cured. And we won’t stop until they are.”

As far as my experience of bucket collection, I have never done this before; however, I will say that I highly enjoyed it. 

Fortunately, many people did show up for the David Capel memorial cricket match to show their support for this wonderful cause and to honour the memory of David Capel.

While it may have rained on us at times during this event, we certainly did not let the rain stop us from collecting donations for The Brain Tumour Charity.

The Brain Tumour Charity volunteers and I walked around during the cricket game – Northamptonshire Cricket Club against the Somerset County Cricket Club – to collect donations in our buckets for The Brain Tumour Charity. Not only did I enjoy collecting donations for The Brain Tumour Charity, but I also enjoyed meeting many of David Capel’s family and friends as well as hearing from others who care about this cause and what it means to them. 

Being an American also proved to be beneficial as many of the people we spoke to got excited that I was there and quickly wanted to donate what they could to the cause. At one point one of the leaders of our volunteer group had me walking throughout the stands to reach more potential donors, so that we could get more donations. It ended up being an affective approach, because we got many donations.

As far as the other volunteers that I worked with, they were extremely kind and supportive. It was just lovely being able to connect with them and hear their stories about why they decided to get involved with The Brain Tumour Charity and what other work they have done to raise funds and awareness for The Brain Tumour Charity.

After participating in the David Capel memorial cricket match, I walked away having made many new professional contacts as well as I made many new friendships. 

Moving forward, I hope to participate in many more events like these with The Brain Tumour Charity, so that we can make a difference by raising awareness and hopefully find a cure for brain tumour(s). Additionally, I hope to get even more involved with The Brain Tumour Charity, so that I can reach some of my personal goals that I have for myself – to help those who are battling a brain tumour(s) and its challenges that it comes with it.

Journo Jess participates in 10,000 step a day challenge for the Brain Tumour Research charity

‘Just 700 more steps to go. Almost there.’ 

These are things I thought daily when I was doing the 10,000 step a day challenge in February 2021.  

I was beyond excited to participate in a charity step challenge and while I may have never done one before and wasn’t in the best of shape, I still wanted to do it – to raise funds for the Brain Tumour Research charity, so that we can be one step closer to finding a cure for brain tumours. This charity, for obvious reasons, is a cause that is close to my heart.

The unprecedented challenges before charity fundraiser

On a side note, a week before starting the 10,000 step a day in February challenge, I had actually taken a pretty bad fall when I was getting out of the shower.

As I was getting out of the shower the floor had been wet because I had cleaned the floor right before hopping in the shower, and when I went to get out of the shower, the rug slipped from under my feet and I went head first into the toilet. Thank God I was okay and that fall didn’t do anything to my shunt.

While it was a pretty painful fall and I was shook up for the first day or so, although I was still determined to stick to the plan – to achieve my goal of 10,000 step a day in February whilst attempting to raise  £300 for the Brain Tumour Research charity. 

Ready for the challenge!

I’m not going to lie, the first week was rough. 

As I was still recovering from that crazy fall while also not getting much daily exercise because I had been self isolating quite often amid the pandemic. Therefore, I decided to start by getting my daily steps in by hopping on my treadmill throughout the day.

Turns out, it’s actually harder than you might think to ensure to get 10,000 steps a day. Personally, I was found it nearly impossible to achieve my 10,000 steps a day challenge the first week while only utilising my treadmill. Therefore, I decided I had to switch it up – so I added daily walks with my husband to parks near by so that I could reach my 10,000 step a day challenge. I noticed, as soon as we started doing this, I was easily hitting my 10,000 step a day goal!

Although, anytime I noticed on my Fitbit I was not getting close to achieving my 10,000 step a day goal, I would  hop on my treadmill just to get more steps in so that I could end my day more successfully. 

Another unprecedented challenge

I will say, it got challenging once again to achieve my 10,000 step a day challenge, because when I was offered my first jab for the Covid-19 vaccine I immediately jumped on that opportunity.  However, I did have some side effects.

Fortunately, my side effects were very mild, but I was very fatigued for the first week after getting my Pfizer jab. This of course made it all the more difficult to achieve my 10,000 step a day challenge in the middle of my challenge.

Completed the challenge

All in all though, it was a terrific experience! I felt so proud that I was able to participate and raise money for a charity that is trying their best to help those who have affected by brain tumour(s). 

Looking ahead, I have already decided that I do plan on participating in the next 10,000 step a day challenge for the month of February 2022. Additionally, I also hope to double my original goal and hopefully will succeed by doubling my goal to £600 for the 10,000 step a day challenge for The Brain Tumour Research charity. Hopefully the more effort that goes into research for a cure for brain tumours the closer we can be to finding a cure for brain tumours.

Personal Blog Posts

©Stock image – 229138462 – by Africa Studio

Featured below: Blog Posts I produced, which are based on things that matter to me on a personal level. Please click on Title(s) or Image(s) to view each post. 

Causes that my husband & I care about/support

Journo Jess raises money for & donates hair to The Little Princess Trust

Finding purpose during my Gap Years

Causes that my husband & I care about/support

The Pediatric Brain Tumor Foundation

About the Foundation:

“Imagine a world without childhood brain tumors. 

That’s the future we’re fighting for. The reality, though, is that 13 children and teens are diagnosed each day with a brain tumor, more children die of brain tumors than any other cancer, and survivors often face lifelong side effects and years of tests and treatments.

As the world’s leading nonprofit dedicated to children and teens with brain tumors, the Pediatric Brain Tumor Foundation’s mission is to care for families along their journey, cure all childhood brain tumors, and help survivors and families thrive.” 

– Pediatric Brain Tumor Foundation

Why I care about this organisation: As I was growing up, my family and I firmly believed to support the causes that have helped us get through the distressing times we have had to endure with the many brain surgeries I have had to have; therefore, I have participated in many Pediatric Brain Tumor Foundation Fundraiser’s. Ride for Kids is the main event we often attended. The Ride for Kids is an event where sponsors raise money thoughout the year in creative ways, then we gather in locations all throughout America to report back how much has been raised and Honda motorcycles donates a motorcycle to the group who has raised the most money. 

Featured above: Myself about to go on a ride on a motorcycle for Ride for Kids fundraiser
Featured above: Myself on motorcycle next to my mom and cousin Hannah Shay
Featured above: Ride for Kids sponsor and myself
Featured above: Myself sharing with the Ride for Kids volunteers the story of my brain tumor experience and my gratitude to those who have helped raise funds to find a cure.

The Make-A-Wish Foundation in America

About the Foundation:

“Wishes are more than just a nice thing. And they are far more than gifts, or singular events in time. Wishes impact everyone involved—wish kids, volunteers, donors, sponsors, medical professionals and communities. 

For wish kids, just the act of making their wish come true can give them the courage to comply with their medical treatments. Parents might finally feel like they can be optimistic. And still others might realize all they have to offer the world through volunteer work or philanthropy. “

– Make-A-Wish Foundation in America

Why I care about this organisation: When I was 16 years old, I was given the opportunity to meet Courtney Cox. I choose to meet Courtney Cox as my Make-A-Wish, because I was obsessed with the show F.R.I.E.N.D.S growing up. It was the only show I wanted to watch when I was recovering from every brain surgery. It was truly the wish of a lifetime. The Make-A-Wish flew my family and I out to L.A. where we meet Courtney Cox on her show that she was producing at the time called ‘Mix it up’. Courtney was so sweet and caring about my situation. It was an experience I’ll never forget! 

Featured above: Myself, Courtney Cox, and my sister Colleen Quinlan

The Little Princess Trust

About the Trust

“The Little Princess Trust provides free, real-hair wigs for young cancer sufferers or for children and young people experiencing the devastating effects of hair loss. We also fund pioneering, life-saving research into childhood cancers.”

– The Little Princess Trust

Why I care about this organisation: As it has been two years, since I had my last brain surgery and with considerations to the fact that my surgery hair has grown out quite a bit as you see in the picture, I decided to not only cut my hair to even it out, but to also cut the required minimum amount of 7inches/17cm in order to donate my hair to The Little Princess Trust.

To hear more about why I decided to donate my hair to The Little Princess Trust, please follow this link.

Also, if you would like to help at a child receive a free wig as they are loosing their hair or have already lost their hair due to a medical condition, please follow this link.

The Brain Tumour Charity

About the Charity:

“Brain tumours have a devastating impact on people’s lives. They can strike anyone, at any age. And they strike fast. But what if we could move faster? What if we could be the generation that stopped them – right in their tracks?

As the world’s leading brain tumour charity, that’s exactly what we’re here to achieve. We’re dedicated to accelerating progress in how brain tumours are diagnosed, cared for, treated and ultimately cured. And we won’t stop until they are.”

– The Brain Tumour Charity

Why we care about this organisation: Upon moving to the U.K. my husband and I discovered The Brain Tumour Charity and becuase my husband knows how much a cause  such as The Brain Tumour Charity means to me, because it can further researchers efforts in finding a cure for brain tumours he decided that we needed to be become monthly donors. I hope with our efforts, amongst many others, we can find a cure! 

The Make-A-Wish Foundation in the United Kingdom

Make-A-Wish Mission Statement:

“Our mission at Make-A-Wish UK is to create life-changing wishes for children with critical illnesses.

To enable us to grant as many life-changing wishes as possible and to deliver the One True Wish of each child, we carry out a programme of fundraising. This is intended to generate enough funds to meet current demand and maintain appropriate cash reserves to cover future foreseeable needs.

Critical to our mission are the efforts of our volunteer force and the essential generosity of our donors. We strive to widen and deepen our relationship with both.”

We have four strategic goals in place to help us deliver our mission:

  • To grant a wish for every eligible child
  • Every wish has more of an impact on the child and their family
  • More people believing every (eligible) child needs a wish
  • Accelerated, sustainable growth of income and resources

– Make-A-Wish United Kingdown

Why I care about this organisation: Upon moving to the UK, I decided to do research to see if they had an organisation like the Make-A-Wish they have in the United States. After doing some research, I found out that they do. In the future, I hope to work with and help in the making of a child – who lives with a life-threatening condition – wish come true, just like I had my wish come true 16 years ago. 

The One Life to Love Orphanage home in India

About the One Life to Love:

Courtney Regina Lalotra – Founder & president of One Life to Love – opened the doors of One Life to Love 10 years ago. The One Life to Love is an Indian orphanage home who now houses 10 boys who have ‘special needs’.

But not only that, One Life to Love also has over 30 children who come every day for day care services, women alliance programs (where they provide sanitary pads for women who don’t have access to them), and they are also sponsoring education for more than 300 girls to go to school.

To find out more about American humanitarian Courtney Regina Lalotra story and what more One Life to Love is  doing for their community, please read the article that I wrote about One Life to Love here. 

Featured above: Courtney with a child who is a part of the Daycare & Education Center for Migrant Children

Why I care about this organisation:

Courtney Regina Lalotra is a childhood family friend of mine that I have known since I was a kid. Courtney’s mom and my mom were best friends, so they of course had their kids go on many playdates. We loved to have fun as you can see in the picture below. But more than this, Courtney’s heart never changed as she grew up. She has a burning desire to help others as do I; therefore, this is why I choose to support/help a cause such as this. 

Journo Jess raises money for & donates hair to The Little Princess Trust

“I understand – on a personal level – what a child has to go through when they loose their hair due to a medical condition.” – Journo Jess

My Story

I was told at the age of 12 that I have an Astrocytoma Benign Inoperable Brain Tumour. Where my tumour lies it blocks fluid from flowing; therefore, the doctors had to immediately put in a shunt to alleviate that fluid pressure build up. The doctors saw on my MRI that my retinas were under so much pressure, because of my brain tumour, they were on the verge of exploding – I was very close to going blind.

On the bright side though, once the doctors put the shunt in my head, it helped enormously to alleviate that fluid pressure build up. Furthermore, as long as my shunt works efficiently I can live a long full happy life; however, I have had many problems with my shunt(s) in the past – I have had 28 shunt revisions/ brain surgeries over my lifetime, because my shunt(s) have malfunctioned many times.

Every time I have had to endure a brain surgery, the doctors had to shave a good amount of hair off in order to perform the brain surgery. When I was a child, that was devastating to me. I was just like any other normal 12-year old girl, I loved my hair. 

When I began having brain surgeries, it took a lot for me to gain the courage to look at where the doctors had shaved my hair off. Moreover, when I did find the courage to look at the shaved part of my head for the first time, I waited until all of my family and friends had left my hospital room. I went to the mirror and took another mirror to look at the back side of my head to see what it looked like. It devastated me. Honestly, I just felt like the ugliest person in the world. Obviously, I knew deep down I wasn’t. But that was just how I felt. 

It has taken me 16 years to feel comfortable enough to share with the world and the public what my head looks like underneath my hair when the doctors have to shave my hair for surgery, but now I can proudly share with the world what it looks like, because I know even though I had to get my hair shaved for brain surgery, I know that I am still beautiful.

Above picture: Surgery from three years ago.
Above picture: Surgery from three years ago.

My decision to donate my hair & my transformation

The Little Princess Trust makes wigs out of hair donations and then they distribute the wigs – free of charge – to children or young people who are loosing or who have lost their hair due to medical treatments, such as Chemo Treatments.

A cause – such as The Little Princess Trust – is something that I hold very close to my heart, because I understand – on a personal level – what a child has to go through when they loose their hair due to a medical condition.

Since it has been two years when I had my last brain surgery and with consideration to the fact that my surgery hair has grown out past my shoulders, I decided that I wanted to cut my hair to even it out. But more than that, I also wanted to donate 10 in/25 cm of my hair to The Little Princess Trust! 

I wanted to give the gift of my hair a child or young person, which is something I understand. Having your hair cut for brain surgery can truly have a psychological affect on a child or young person – especially a female such as myself.

Even though I was fortunate that I only had to have my hair shaved underneath and it wasn’t all that visible to others, it was still something that very much bothered me. For example, even after I had brain surgery and the doctors had me walking around, I felt like the ugliest person, because I had that large incision on the back of my head plus a large portion of my head was shaved. 

Either way though, I am beyond grateful I survived so many brain surgeries throughout the years and I now have the chance to give back what I’ve been given.

So now is the time to give the gift of hair to a child that may need it to boost their self confidence, because it is truly so important if they are loosing their hair due to cancer treatments.

About the Little Princess Trust

While The Little Princess Trust does not charge the recipients who receives the wig, it does cost the foundation £550 to make the wig, which is why I choose to not only to donate my hair to The Little Princess Trust, but I wanted to raise enough money for at least one wig for a child to be made and to further the research efforts in childhood cancers. 

“The Little Princess Trust provides free, real-hair wigs for young cancer sufferers or for children and young people experiencing the devastating effects of hair loss. We also fund pioneering, life-saving research into childhood cancers.”

– The Little Princess Trust

Video featured below: The Little Princess Trust explains who they are, what they do, and what goes into making it possible for a child or a young person to receive a wig – free of charge.

Little girl gains confidence after receiving her wig from The Little Princess Trust

As I was doing my research while putting this post together, I stumbled upon this YouTube video below of the Morning Show. It features little girl – Jodi – who was diagnosed with a brain tumour. 

Jodi honestly reminded me a lot of myself of when I went through my surgeries, because she wanted to appear as a strong, tough girl. She told the presenters ‘it was fine, it was fine.’

Jodi and her mum shared their story of her brain tumour battle that they have had to endure. Jodi also shared what it meant to her that The Little Princess Trust donated a beautiful princess wig to her.

My donors to the Little Princess Trust

With the help of my wonderful supporters, I was able to raise £325 towards my goal of £550, which is how much it costs to produce one wig for a child or a young person who have lost their hair due to a medical condition. My donors are featured below.

CARI REED (FAMILY FRIEND) - DONATED $250
RAY RASHID (MY HAIR STYLIST) - DONATED £45
DIANA SHAY (MY AUNT) - DONATED $45
LIZ QUINLAN (MY MOTHER) - DONATED $50

If you felt inspired by my story and would like to donate to such a good cause, please follow this link to make a contribution. All proceeds go towards the Little Princess Trust Foundation in order to make the wigs for a child or young person who has lost their hair due to medical treatments and the funds also help researchers to find a cure for childhood cancers. 

The Little Princess Trust fundraiser completed

I cannot put into words just how much it meant to me that I was able to donate my hair to such an amazing cause who is providing free wigs to those who are loosing their hair due to medical conditions. 

Additionally, I appreciate each and every person who supported me in this fundraiser – financially and offered words of encouragement. Hopefully, I’ll be able to do something like this again, but until then let’s continue to support this great cause – the Little Princess Trust! 💪🏻

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