Keele students provide vital help to Smith-Magenis Syndrome Foundation

A genetic disorder charity has increased the scope of their support services with the help of two Keele interns this Summer.

The Smith-Magenis Syndrome (SMS) Foundation UK is a small UK registered charity that supports families who have children and adults with SMS and provides information for professionals working with these families. Smith-Magenis Syndrome is a genetic disability which can cause mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioural problems.

It is estimated that 1 in 15-25,000 people are diagnosed with the syndrome, suggesting that up to 4,500 people in the UK have SMS.

The Foundation enlisted two students – Natasha Craven and Xheni Prebibaj - through the University’s virtual internship scheme to undertake a 100-hour project, which was fully-funded by Santander Universities, to establish the actual diagnosed population with SMS and to enable them to build on their current membership database of over 300 patients.

The outcome of the project has assisted the Foundation in scoping the potential size for a patient registry, identifying geographical areas for support services and activities, creating age-appropriate information and guidance for newly diagnosed families, and the provision of training, seminars and symposiums for professionals and families.

Nigel Over, Chief Executive Officer of The SMS Foundation UK, said: “This has been mutually beneficial as we have been able to see a critical study undertaken. There is comfort in recruiting from an internship programme that provides confidence in the selection and abilities of the candidates.

“Critical to our approach has been the desire to ensure that the project is meaningful to us and the student and that it provides a positive learning experience. The students have brought fresh ideas into the charity, an eagerness to learn, and has given us a different perspective as to how we can develop in the future.”

Natasha, a final year biomedical science student, said: “I loved every second of my internship. The team I was working with over the summer was amazing - Nigel, Leeann and Xheni were all incredibly dedicated to the project and allowed such amazing flexibility to work.

“The internship with the Smith-Magenis Syndrome Foundation really stood out to me and allowed me to combine my passion for helping people with my interest in demographics and genetics."

Fellow student Xheni, a third-year neuroscience student, said: “I wanted to do an internship to gain experience on working remotely, which I really love now. Then when I saw the advertisement of the Smith-Magenis syndrome internship and I really liked their motivation and ambitions, which I found really inspiring.”

“The internship gave me a lot of experience in working with demographic data, technical report writing and working remotely without supervision.”

Santander Logo 2019 ed 200px To find out more about our internship schemes including Santander Universities UK programme and our fully-funded charity internships please visit our placements, internships and careers page 

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