CHARITY: PART–TIME (2 days per week) PROJECT COORDINATOR
18 month contract
Nephrotic Syndrome Trust (NeST): Background Information
Nephrotic Syndrome is a debilitating set of symptoms which affects 10,000 people across the UK, and which can cause long-term damage to kidney function. The syndrome commonly affects children and young adults, as well as adults later in life. There are a number of different diagnoses within the overarching nephrotic syndrome, which are gradually becoming better understood thanks to UK research, pioneered by the University of Bristol, and international partners.
Nephrotic Syndrome Trust is a voice, educating people that were unfamiliar with the condition and helping people young and old, from all walks of life to cope better knowing all their options to manage and cope with this rare kidney condition. Our charity aims are to raise awareness of the condition, fund research to find a cure and provide a hub of knowledge and support for NS sufferers and their carers.
The money fundraised by NeST goes to NURTURE, a significant research programme at Bristol University, led by Professor Moin Saleem and Dr Gavin Welsh and colleagues.
NeST has recently been awarded a grant from the 'Wellcome Trust' to help our charity to empower young patients to co-design an app to the Nephrotic Syndrome Community, which includes researchers, patients, families/carers and clinicians. The core plan is to develop and test an app or digital technology platform, an idea initiated by the Nephrotic Syndrome Trust (www.nstrust.co.uk) and researchers at the University of Bristol.
The process of developing the app will involve 6 roadshows across the UK. Young adults will be recruited to manage dynamic events, to test and share the app.
This part-time role, funded by the Wellcome Trust is for assisting the NeST Director to deliver 'NURTURING NEPHROTIC FUTURES' Digital Innovation to Improve Both Shared Care and Data Capture for Research.
Main Responsibilities –
The Ideal Candidate will have the following qualities, skills and experience.
A highly motivated individual, who is efficient with excellent organisational skills.
A skilled communicator, with the ability to interact effectively and build relationships with a wide range of people, but particularly with our young people aged between 16 -25 years of age.
An interest and understanding about technology and how it can best be applied in a personal healthcare context.
A strong sense of charitable purpose and a positive and joyful will to support vulnerable people.
An understanding of what it is like to live with chronic illness.
Ability to support young people in delivering specific tasks and to respond to their ideas and build their confidence.
Ability to work on own initiative, well-organised with strong attention to detail.
Fabulously friendly, confident phone manner.
Ability to use email, Microsoft Office (Word, Excel), and facebook / social media.
Event management, planning, coordination skills.
Work with young adults (adult education / careers advice / youth work).
Experience of keeping records and using Microsoft Office, email, social media (facebook groups).
Partnership-working with research and technology sector.
Work within charity sector and small charities.
Desktop publishing / technology awareness.
It would be helpful if the person lives within accessible distance of NeST office and/or Bristol labs (work 2 days a fortnight or one day a week there during the first few months).
The post will be subject to a three month probationary period.
Interviews: 10th of July 2019
Proposed Salary: £22,000 pro-rata (negotiable)
Further Information About The Charity
Nephrotic Syndrome Trust (NeST) was launched by our founder David Yearsley in 2005 after his son was diagnosed with the condition with the help of Jonah Lomu the international rugby star player who himself was a sufferer, but now sadly passed away. Shortly afterwards Wendy Cook came on board to help lead charity after her son was transplanted at Bristol Children's Hospital and had recurrence of Nephrotic Syndrome in his new kidney.
Nephrotic Syndrome patients currently receive a mish mash of toxic medication which sometimes works, or for a limited only, or not all whilst experiencing very distressing side effects both short and long term. Many patients are exasperated and exhausted through taking huge amounts of medication which simply does not work, or at the very least just manages the condition. The horrendous side effects have meant many patients being admitted into hospital, which of course impacts greatly on their quality of life and their immediate family.
We're committed to safeguarding and promoting the welfare of children, young people and adults at risk and expect all staff and volunteers to actively support this commitment.
Our vision is to accelerate research to deliver more effective medicine and walk alongside sufferers and their families giving them the information and resources to support them on their journey no matter how challenging it is to help manage their debilitating rare kidney condition. If you think you would like to part of our NS community journey please join us!
To learn more about the work we do www.nstrust.co.uk
If anyone is interested in this position please either email Wendy Cook at [email protected] attaching their CV and a covering letter, or post to Wendy Cook at the following address 38,Southway Drive,Yeovil,Somerset BA21 3ED.
The deadline for applications is the 28th Of June.