Gavin Griffiths

Trustee Member – Advocacy, Community & Events

Honorary Member of International Society of Pediatric & Adolescent Diabetes (ISPAD); Royal Commonwealth Society (RCS) Associate Fellow; International Diabetes Federation (IDF) Lifetime Achievement Award; Citizen of Honor in Targu Mures, Romania; London Borough of Bexley Civic Award; BA Hons in Media Writing.

“Diathlete started as a community movement for people sharing this condition in common; grassroots and sharing an open and transparent approach to talking about and supporting peers in type 1 diabetes. Those are the core values that we hold together as our rock to build this house on, as Diathlete moves into a charitable incorporated organisation.  When I was diagnosed, over 20 years ago on the turn of the Millennium, I started out on vial syringe doses of insulin at strict times of the days, with much for limitations when it came to areas of diet and education. I was 8 years old and all I wanted to do was get back out doing what I loved most, playing football and sports, but there were many unanswered question-marks back then as this diagnosis brought doubt and confusion. And furthermore, I recall in school it being a struggle to fit in, feeling uncomfortable in myself and different to others all behind closed doors, not wanting any special attention. Type 1 diabetes is as emotional psychologically speaking as it is day to day calculated with our insulin doses. The approach to education has often lacked for inclusion in this essential area; nobody is going to welcome a medical condition like diabetes into their lives with open arms, but the more we can share, the more we can engage, the more we can make this new language of “diabetes talk” which we have no choice but to learn come relatable, bite-sized and digestible for us to feel confident about working with, the more we will grow positively with this. Today, there is an on-going evolution of healthcare essential with many advancing technologies, but there needs to be both a support network which ensures that areas of care and access are not left behind – country to country, and from within region to region – and the support where these many differing options and types of treatments that are expanding, as highly beneficial as they may be, also bring new areas of psychological challenges to adapt to. Type 1 diabetes education is essential, and the approach to it needs to come with the right balance of encouragement.

In my life I have taken on a number of interesting / crazy endurance challenges, supporting fundraisers and campaigns in the process. Some of these include running around the 67 mile perimeter of the Isle of Wight in 2010; attempting to run 30 mile marathon routes every day for 30 days from John O’Groats to Land’s End in 2013; in South Australia, with the first Diathlete Down Under tour, running a 55km marathon from Mount Lofty to Adelaide and on to Semaphore Beach; running around Long Island’s perimeter in a week for Marjorie’s Fund, in New York in 2014; from 2015 to 2018 (and hopefully again in future) completing the annual Ascotid Trail Race since its inception in Targu Mures; cycling from Brussels to Paris to Geneva via the Alps in the 10 day mHealth Grand Tour in 2015; running a very humid half marathon from Tema to Accra in Ghana as part of a campaign for Diabetes Youth Care; trekking around the active volcano, Hekla, in Iceland, in the World Diabetes Tour challenge in 2016; launching a series of local 5km runs with diabetes communities across 6 continents of the world in the Diathlete Global Tour documentary in 2017; running 25 marathons in 1 month around the UK and Ireland in 2018; and most enjoyably with the League of DiAthletes team in 2019, trekking from Los Santos to Quepos through the Costa Rican rainforest over 3 days. Each of those experiences were a key learning curve in my life, as I met so many people who each shared this in some way in common, personally living with it, family members or health professionals, and they empowered me – sometimes the ability to listen is the ability to grow, before your own actions. My first was in 2008, I was 17 and had made my mind to do something, not entirely sure as to what, but had found a desire to try and positively impact our cause in some way, shape or form; there was a lot of questions and even discrimination in areas for type 1s in sports back then, so I decided to try run a marathon – but was too young to register for the London Marathon – so I decided to make my own. There was a 29 mile coastal path route on the Kent coast if England I knew of through family being down there, so the goal was to run a 29 mile marathon in Thanet for my local diabetes team at the time at Queen Mary’s Hospital, which successfully funded a new Hba1c testing machine for the clinic; and with a great personal success of smashing the marathon in 3 hours 1 minute – just a bit gutted by the minute at the time!”

 

Tracy Power

Trustee Member – Media & Networking

“I have lived with type one Diabetes for almost 20years, since my diagnosis at the age of 17 2018 I was blessed to receive a Pancreas transplant along with my life saving kidney transplant. I am now living free of diabetes. I no longer require insulin therapy and have a healthy fully functional pancreas.

So why am I still immersed in the world of diabetes? Because I understand only too well how this disease is completely unique, unlike any other, one requires 24/7 care and diligence from the patient and carers. They require support, education and empowerment to live with the disease and without those fundamental tools the disease can be the single most devastating diagnosis for anyone to deal with. I want to be part of a movement that passes on the skills and tools needed to deal with the disease. I am passionate about helping those living and dealing with t1d and I want pass on what I have learnt through my own experience.

I write a blog about living with my conditions and how to live life with limitations. I try to keep things positive and upbeat, whilst at the same time, not shying away from important issues such as demanding better health care, and how to cope with sight loss, which I have had to deal with since losing vision in my right eye due to diabetes complications. My blog has a large wide spread following from USA, Europe and Asia. My connected social pages also have a good amount of impressions and I have over 2k followers on Instagram.

I have given talks in schools and to small adolescents about my blog. Along with my sister who is a pastoral carer in a secondary school in Kent. We successfully implemented a monthly meet up for the diabetic students within the school and gave them the structure within that meet up to share and discuss their own diabetes stories and troubleshoot any difficulties they were facing. It was a successful programme that teachers in the school committed to supporting the framework for the meet up.

My career in TV and Film Production is where my knowledge of the media and marketing industry was born and raised, leading me to have involvement in crowdfunding, campaigning, fundraising, corporate responsibility and working alongside charities such as MIND, Papyrus and England Amputees Football Club.

Teens Unite is a small charity local to my home town. It helps those of teenage years and beyond, living with life limiting cancers and diseases. I have become a registered volunteer, helping out with small scale tasks, event stewarding, fundraising, event organising and data and administrative tasks within the organisations headquarters. www.teensunite.org.uk

A charity that have supported me some of my illness is The Isabel Hospice. They have given me personal support and a network of friendship and advocacy. In turn when I have become less dependent on the help, I have began raising awareness, fundraising and support for them through social media and networking. www.isabelhospice.org.uk

Fundraising for Help For Heroes has been a passion of a family member of mine and in turn, I have leant my support to him, in organising boxing events that donate funds to H4H I am responsible for gathering the merchandise that is sold on the event and also personally asking face to face for gift donations. www.help4heroes.co.uk

JDRF, Diabetes UK, NHS England, Organ Donation and Give Blood campaigns have all been helped in a small way just simply by raising awareness through my personal and my blogs social media platforms.

My involvement with The DiAthlete came about when I met Gavin at a Type One Diabetes Patient Day at Addenbrookes Hospital where I received my Kidney and pancreas transplant. We met back in 2005 and hearing Gavins personal story and his ambition to change the way an individual views their own diabetes, spurred me on to make a similar impact. He and I have become good friends and share a focus and vision to empower people living with the condition to be their own champion and take control of their lives. I have attended conferences held by Gavin and 2018 I was able to attend to first DiAdvocates Summer Camp where we saw the birth of a very important movement to empower those with Diabetes.

 

Jennifer Dunn

Trustee Member – Secretarial & Risk Assessments

As a parent of a child with Type 1 Diabetes, Jennifer has experience in caring for her son Andrew.  Throughout the last 3 years Jennifer has learnt knowledge on the condition and how to manage this effectively from managing insulin doses through injections, carbohydrate counting meals and the use of technology such as insulin pump and continuous glucose monitors.  To gain more insight and knowledge on the condition Jennifer has attended JDRF insight conferences with particular interest to the support available for those diagnosed and the parents affected.  Funds have also been raised for JDRF by doing local events at her sons’ primary school, which included teaching a class of year 6 students on type 1 diabetes history, management and mathematic involvement which created a great discussion and positive support and understanding by the students.  This has also been replicated through work as Jennifer has provided awareness sessions, Public speaking at conferences to senior leaders about what it means to be a carer and insights to the condition, ensuring that hidden disability is a focus on the Diversity & Inclusion agenda.  With a strong passion to reach the wider community, Jennifer assisted Gavin in arranging the Birmingham marathon during his ’25 marathons in 30 days’ challenge during May 2017.  Using experience and skills of organising she was able to arrange a whole school assembly and active session with a local primary school to start, interacting with a number of NHS care providers during the route and completing the event at a nationally recognised football stadium.  The positive collaboration also inspired her son to run alongside Gavin to complete the event.  Throughout her career Jennifer has held a number of positions including, office manager, personal assistant, customer manager and most recently a risk manager for Ministry of Defence.  Using a multi range of skills such as stakeholder management, project management and collaboration Jennifer founded the Defence Infrastructure Organisation Disability Network in January 2018, providing support for colleagues with disabilities including hidden disabilities and those who care for a loved one with varying conditions.  The network has matured over the last 2 years with established governance in place which has aided a number of initiatives to be introduced MOD wide such as the carers passport and ensuring accessibility is both recognised and supported across the organisation.  In December 2019 Jennifer was awarded a DIO recognised values award for integrity for founding the network which was presented to her by the Chief Executive.  In previous years Jennifer has also been nominated for both engagement and collaboration awards whilst working for the same organisation.

Through personal experiences and skills that Jennifer has excelled in throughout her career she will be able to apply these to her role within the Diathlete Foundation to ensure the secretariat role is fulfilled with passion, professionalism and a strong willingness to help the charity become established within the community to achieve it objectives.

 

Sara Thomas

Trustee Member – Finance & Administration

“I am a parent of a child with type 1. My son Jarvis was diagnosed in 2008, when he was 4 years old, he is now 17.

Because of his age on diagnosis, I took charge of looking after his diabetes, obviously as he has grown, he has taken on the responsibility of looking after himself, although he still likes me to do his cannula change. As his parent it can be difficult to take a step back and allow him to take the control.

Jarvis is very keen on sport, he has played football since the age of 6 and has recently moved up to senior football, he also enjoys working out, jogging and boxing.

We as a family, have known Gavin for several years and have followed and supported him.

I was thrilled when asked to be a trustee of the DiAthlete charity, as I believe in what it stands for and know it will help many others living with diabetes.”

 

Paula Chinchilla

Medical Support

Paula

 

Sarah Williams

Patient Support

 

Ange Griffiths

Carers Support

 

Vince Griffiths

Media Support

 

James Dunn

Events Support

 

Simran Bal

DiAthlete Advocate