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DrugStar Pearl Kelly

07 January 2021

Pearl from Liverpool, who has NF1, amongst a variety of other complex conditions, is one of our many active fundraisers and supporters within our NF community. She receives treatment for her NF at St. Mary’s Hospital in Manchester and is often visiting specialists around the region for her other conditions. When we asked our community to sign up to use the DrugStar App, Pearl gladly joined.

With every medication she took, she gained one Star, this meant a 1p donation for Nerve Tumours UK, which over a year culminated to a significant amount

Pearl is a huge Everton fan! She knows the team & Chairman, both of whom who supported her by buying her an electric wheelchair.

"Thank you to the chairman, Bill Kenwright and Leighton Baines of the Everton Football Club for supporting me, those affected by Neurofibromatosis in the UK, and integrating me into the Everton team as half-pint! Keep kicking!" 

In her own words Pearl says: “I am close to bed-bound and this is a way I can still fundraise and give back. It does not cost me anything, I get reminders and I simply do not forget to take my medication”

Why not follow Pearl’s example and join Drugstars

Here is how this works

Simply download the app and when you purchase your regular medical prescription you earn rewards that can be exchanged as free donations. Select Nerve Tumours UK to donate your rewards to and we receive cash donations on your behalf.

Drugstars also has a patient forum where you can hear experiences from other patients just like you about the medication you are taking. More than 400,000 patients worldwide have reviewed their medications on DrugStars so you can hear what they think directly from the patients themselves on their forum below.

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Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

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Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

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Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

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Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

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Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

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Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK