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All news

Find out the latest news about JDRF's research and fundraising events.

Displaying T1 Youth Ambassadors

20
Dec

JDRF supports Phil Packer’s BRIT 2012 Challenge every step of the way

Local boy and JDRF T1 Youth Ambassador Nick Taylor, 16, from Claygate joined JDRF staff at Canary Wharf on the 18 December to take part in the last leg of the British Inspiration Trust BRIT 2012 Challenge.

JDRF staff and supporters walked with Phil Packer MBE, founder of BRIT, in the last mile of his incredible 2,012 mile journey, the equivalent of approximately 310 marathons in 331 days, and show their support for such a great cause. 

JDRF’s CEO, Karen Addington, who is a BRIT advisor, was invited to join Phil Packer on the last mile and was joined by supporters Nick and mum Sally. Nick, a Reed’s School student was diagnosed with type 1 diabetes aged three, was proud to represent the 29,000 children who live with the life-long condition in the UK.

Nick said: “It was a great day and I was really pleased that I was able to take part in such a momentous journey and join the JDRF team. JDRF has played a big part in my family’s lives since I was diagnosed and we try and do as much as we can to raise awareness and vital funds to support research, so that JDRF can one day find the cure.

Phil is a true hero and someone to look up to, as he hasn’t let anything hold him back. I guess you could use Phil’s inspiration and courage when it comes to type 1 and controlling  your condition, instead of it controlling you and don’t let it stop you doing anything.”

JDRF’s CEO, Karen Addington said: “Phil is an inspiration to each and every one of us and we are deeply moved by the work that Phil does. This challenge particularly showed his courage and strength and is living proof that anything is possible. We were delighted to support him on his last part of his journey and wish Phil and his team all the best with the new centre. A huge congratulations to Phil for completing an amazing challenge – well done!”

Talking about his experiences Phil Packer said: “This has been an extraordinary year and completing this challenge is a landmark way to finish. 2013 needs to be the year that BRIT comes to life and I need businesses to step up and help us do that. The challenge now is about building a legacy for a part of our society; young people post-traumatic experiences desperately in need of our help. I’m grateful to have both Karen’s and JDRF’s support along with other charities – so thank you.”

The journey which started on the 24 January saw Phil walk the length and breadth of the country to raise awareness for BRIT and aims to raise £15 million to build the first BRIT Centre of Inspiration in West Sussex for young people facing adversity.

Much of this time was spent walking with young people both able bodied, like Nick, and with disabilities from across the mobility and cognitive spectrum that have inspired Phil to push forward with his aspiration to build a centre that caters for young people of every background and disability.

It has been a huge personal achievement for Phil who suffered a severe spinal cord injury, whilst on operational duty in Her Majesty’s Forces, where he served for 17 years. Phil was told that he was unlikely to walk again, so for him walking just a mile is the equivalent of three or four miles for someone without a spinal cord injury.

For further information on Phil or the BRIT Challenge please visit, Phil Packer's website or the British Inspiration Trust's website .

View photos from the day below: 

Sally Taylor, Nick Taylor, CEO Karen Addington, Heather Richardson, Rebecca Rawle
16
Jun

T1 Youth Ambassadors meet JDRF CEOs

Some of our T1 Youth Ambassadors met with Karen Addington, Chief Executive of JDRF UK, and Jeffrey Brewer, Chief Executive of JDRF International. Read Ambassador Elizabeth Sheils' account of the day:

"Last Friday I had the opportunity to go to the JDRF offices in London, I managed to see where all my friends work. I also had a peak at the stationary cupboard and spotted many Rufus bears and Pingus! It wasn’t actually the main aim of the day to snoop around the office (that was just a bonus). I was there to meet four other T1 Youth Ambassadors, Karen Addington (chief executive of JDRF UK) and Jeffrey Brewer (chief executive of JDRF International). The Youth Ambassadors had the chance to talk to Jeffrey and ask him all sorts of questions about research, type 1, and how the JDRF runs in the US. I found it was a fascinating day – I learnt lots about the research being undertaken and where it could eventually lead. It was extremely exciting thinking that there are so many ideas surrounding curing type 1 – from once a day injections to small procedures every 18 months inserting ‘protected’ insulin producing cells. Both of these would allow the person with type 1 to live almost as if they did not have type 1 at all, being able to eat without carbohydrate counting and living without the fear of hypoglycemia or hyperglycemia. Unfortunately these types of ‘cures’ are a few years down the line but it encourages me that they are being researched and pushes me to want to do more to raise awareness and money for type 1. I was also greatly inspired by the other T1 Youth Ambassadors and it was fascinating hearing about their work. I really enjoy being part of this programme!

One fact which stood out from the day was about the money used for research into type 1. In 2009, UK government funding bodies committed £51 million to research to tackle diabetes however only £6 million of this was relevant to type 1. Which is a massive contrast compared to the US who spent $150 million, the Australian government committed $36 million and Canada $20 million all on research to help cure, treat and prevent type 1 diabetes. It was shocking to learn that so little is spent on type 1 diabetes however this is also seen in the lack of people using insulin pumps (3.9%) compared to the US (35%) and Europe (15-20%). Even fewer people are using continuous blood glucose monitoring (CGMs). These facts are very concerning when you consider that one of the main pieces of research working to help remove many of the burdens of type 1 is an artificial pancreas composed of an insulin pump, a CGM an algorithm. This would provide the exact amount of insulin and at the correct time to ensure normal blood glucose levels are achieved. However if the UK currently falls behind most of the other developed countries in their uptake for insulin pumps and CGMs this will be a great problem when artificial pancreas systems are readily available. It does seem exceptionally unfair that people who live with type 1 miss out on latest treatments especially if they can make living with the condition a bit easier.

Jeffrey Brewer made an interesting point during the meeting, he said that people living with type 1 have to administer life saving (and threatening) medication everyday for the rest of their lives which definitely puts things into perspective. Type 1 cannot be seen which often leads to people completely underestimating what it is like to live with a life threatening condition. It would be wonderful to have an Artificial Pancreas and I cannot imagine how frustrating it would be if one was released onto the market and only 5% of people could use it!

As T1 Youth Ambassadors we are trying our best to make sure this doesn’t happen! If you would like to join us click here to find out more."

Elizabeth has a regular blog on our T1 Website. Click here to read more about her experience of life with type 1 diabetes.