Apr
21
12:00 AM00:00

Hannah's London Marathon

Our little girl Molly Elizabeth was born on 20th May 2020. A week later Molly was rushed into hospital following multiple seizures and was placed in an induced coma. Molly stayed in NICU for three weeks whilst undergoing many tests and scans to determine the cause. Once Molly was stabilised we were discharged from hospital and had a few agonising weeks to wait for genetic test results to come back. We remained positive and hopeful that we would receive good news for our little Molly.

On 3rd July 2020, our worst fears were confirmed when Molly was diagnosed with a rare, life limiting condition called PDH deficiency, of which there is no cure or treatment. At this point our entire world fell apart, we went home from hospital not knowing what the future would hold for our beautiful baby girl.

The Freya Foundation charity have supported our family since we received Molly’s diagnosis, providing us with much needed hope and advice, the opportunity to connect with other families going through this difficult journey, making us feel less alone.

As well as being on hand to support families they also provide counselling, arrange family meet ups, campaign tirelessly to raise awareness of this condition and are funding groundbreaking research projects to understand more about the condition, enabling better outcomes for children. Their latest research project will focus on developing gene therapy for PDH, this is hugely exciting and will be the first of its kind in Europe.

For such a small charity, they truly are AMAZING and deserve to be recognised.

Any donation you can give no matter how big or small will contribute towards raising awareness of this cruel disease, support more families affected by this condition, and fund vital research projects to find a cure.

Thank you for taking time to read my story.

Hannah x

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10 for Freya
Sep
25
to Sep 26

10 for Freya

Who is up for a challenge????

As you know this year I have reached a milestone that nobody thought I was going to reach - I turned 10 on the 26th of July.

In celebration of this, my mummy has set herself a challenge to raise money for The Freya Foundation and we would like to get as many people involved as possible.

Please see below my mum's reason for doing this challenge:

'This year was a very special one for us as Freya turned 10. As many of you know we were told she wasn't likely to make 2 or 3 so it’s absolutely incredible.

The last 18 months have been incredibly hard. We had to shield from Covid for months, all outside support stopped and we were cut off from the outside world.

My Mum passed away which was devastating and Freya's health deteriorated. Being a carer you can often be forgotten about and shut off from the world around you. Things started to take their toll. I needed to make sure that I was well so I started running to keep myself physically and mentally fit.

So I have set myself a challenge and in honour of Freya turning 10 and my big birthday I've decided to run 4 x 10km over the course of the weekend 25/26 September and the last 10k I will be running with Freya.

Now those who know me know I'm no runner and this is a huge challenge for me'

This is where you come in.........

We would like to invite as many people as possible to try and raise some money whilst having some fun over the weekend of 25 & 26th September - Don't worry we aren't expecting you all to run 40km 😆😆.

We are calling the weekend '10 for Freya' and you can set yourself your own challenge to raise money, it doesn't have to be running.

An extra special prize will be given to the most extravagant fundraising challenge 🤔.

Please click this link for the fundraising page - https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1299217&newPage=true



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Louise Nicholls running a 10k
Nov
10
10:00 AM10:00

Louise Nicholls running a 10k

So contrary to a few recent facebook posts, those who know me know im not a natural born runner. In fact my teacher told me I sprint like a duck. But to raise money for the Freya Foundation I am going to run a 10km.

Freya is a beautiful 7 year old girl with PDH. PDH is a very rare condition and Freya is one of only around 200 people in the world diagnosed with the disease. I had the pleasure of meeting Freya and her family today. She is a happy smiling little girl who gives the best cuddles. She has lots of surgeries and ongoing treatments but through it all she smiles and offers love.

You can read more about her condition and the foundation at www.thefreyafoundation.co.uk

I’d like to raise money for the Freya Foundation to help raise awareness for the condition and help offer support for Freya, her family and other families who have children with this condition. Please donate what you can.

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ROSE WINTER @ THE LONDON MARATHON
Apr
22
10:00 AM10:00

ROSE WINTER @ THE LONDON MARATHON

  • 34250 Charlton Way London, England, SE3 7AP United Kingdom (map)
  • Google Calendar ICS

I am taking on the challenge of running the London Marathon on Sunday 22nd April 2018! Although I enjoy running, this is going to be another level of challenge and 26.2 is definitely going to be tough!

I have decided to raise money for two amazing charities....

Parkinson’s

Parkinson’s aims to improve the lives of people who are affected by the disease. All the money raised is used to help bring forward the day when no one fears Parkinson’s. Just £20 could pay for a month of nutrients to grow brain cells in the lab for research, helping to find new and better treatments.

This charity is close to my heart because my Grandpa suffered with Parkinson’s for the last 20 years of his life. My Grandpa was a big inspiration to me, due to our mutual love for pretty much every sport. He would be very proud to see me take on this challenge and I know that raising money for this charity will help make the difference to people.

www.parkinsons.org.uk

The Freya Foundation

The Freya Foundation is much smaller charity, set up by some family friends whose daughter was diagnosed with PHD. At the time of diagnosis they knew nothing about this disease and set up the charity to support families like them.

The charity works closely with doctors and other medical staff to help find treatments and medical support for those suffering with PHD. This rare disease does not have a good outlook, but with any small amount of money more research can be done and families can be given the support they need.

www.thefreyafoundation.co.uk

Any sponsorship will be split with 85% going to Parkinson’s and 15% going to The Freya Foundation....and any donation will make the difference to both charities.

To sponsor please click here

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Dave Campbell @ The Maverick inov-8 Original
Apr
14
10:00 AM10:00

Dave Campbell @ The Maverick inov-8 Original

 

Dave will be completing the The Maverick inov-8 Original Somerset 2018 in April to raise money for the Freya Foundation.

Set in the tremendous Quantock Hills, this is a seriously good route and back as the toughest Original series event they do! Not only are the views captivating - the trails are brutal! The routes here are set to test your resolve and determination.

Please sponsor at https://uk.virginmoneygiving.com/DaveCampbell3

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Sep
10
12:00 PM12:00
Fundraising

WING WALK BY ELIZABETH WINTER

  • COMPTON ABBAS AIRFIELD salisbury (map)
  • Google Calendar ICS

Kelly and I met in 2007 when we both worked as Cabin Crew for easyJet in Bristol.  Both passionate about all things 'orange' we soon formed a strong friendship.  Today Kelly remains a good and trusted friend and she has shared her journey with Freya with me, to which end I feel privileged.

I will be 60 in December and decided to make 2017 a year of memories, I will be celebrating in New Zealand.  However, to celebrate with my friends in England, I am having a tea party on Sunday 10th September at Compton Abbas Airfield after completing a Wing-Walk.  It is about presence and not presents, so I have asked for contributions to The Freya Foundation.  

To sponsor please click here

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Jul
30
8:30 AM08:30
Fundraising

MATTHEW LEYLAND'S PRUDENTIAL 46 MILE CYCLE RIDE

Matthew Leyland is cycling in the Prudential Ride London – Surrey on Sunday 30th July.  The ride comprises a spectacular 46-mile route on traffic-free roads, beginning at Queen Elizabeth Olympic Park in east London travelling through London and finishing in the Mall. 

Matthew is fundraising for the Freya foundation, a charity started by the family of a little girl called Freya who has a condition called Pyruvate Dehydrogenase Deficiency (PHD).

He chose this charity as his friends daughter Ellie has the same condition.

Ellie is 5 years old and her brain is lacking the enzyme (pyruvate) which coverts glucose into energy.

This condition affects children differently, but causes symptoms such as muscle weakness, difficulty swallowing, developmental delay, structural brain problems and often early death. The future can't be predicted for these children, but dietary changes and various therapies can help to cope with the symptoms.

One of the problems we face with this condition, is due to such little awareness, it is difficult to get research started as it costs thousands, and hence Matthew is trying to raise funds for them.

Those who have met Ellie know that she is a gorgeous, happy, intelligent little girl who just wants to learn, explore, love and have fun (oh, and watch Peppa Pig!!) and Matthew knows that his family and friends would all help if they could, so he is asking for your help, please help us raise money and awareness by sponsoring me for this event.

Please click here to sponsor Matthew
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=MatthewLeyland&faId=861220&isTeam=false

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Jul
9
2:00 PM14:00

THE FREYA FOUNDATION KIDS BIKE RIDE

After last year's success I am planning another kids sponsored bike ride around Grenville Smyth Park in Bedminster.
For more information about Freya please visit www.thefreyafoundation.co.uk
We will meet by the play park at 2pm where you can hand in your sponsorship forms and sign in.
We will start at 2:15pm
Complete a circuit of the park and receive a certificate.
All ages welcome. Doesn't have to be a bike. It can be a scooter, a pram, a wheelchair, piggy back etc
Please let me know if you would like to join in and I will get a sponsor form to you. 
***Please don't feel like you have to collect loads of money to join in. We are grateful for every penny. Bring a pound and show your support and that would mean the world to us 😍

To sponsor please click here

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