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Team Lola

Samantha Kennedy's fundraising page

30 September 2022

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Our beautiful Lola was diagnosed with NF1 in December 2015 and to this day we remain on a learning curve, adapting as we go. Lola is a true warrior and no matter what she faces, she ALWAYS does it with a smile on her face!!!

Lola has learning difficulties, ADHD, verbal dyspraxia, curvature of the spine, hypermobility and has many MRI’s to check for those nasty tumours! Despite all these challenges we find ourselves to be very lucky that we haven’t found any to date!!!!

Team Lola has raised an amazing £47,000 since Lola’s diagnosis and we will continue to challenge ourselves to raise more for this amazing charity!!!

This year team Lola will be participating in a few activities:

Sam (Mum) and Graeme (Dad) - Between them are cycling 5401 km which is the equivalent of Leeds to New York across August/September!!

Helen (Aunt) - Running Leeds 10k and The Great North Run
Andy (Uncle) - Running The Great North Run

#endnf 💙💚💙

Created by: Samantha Kennedy on 04/05/2022

£2,595.00

Goal: £3,000.00

Offline Donations

£0.00

With Gift Aid

£2,823.25

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93 Donations

06/09/2022

No message provided

£25.00

Cath

04/09/2022

Go  smash it Helen! ❤️

£20.00

Vicki

03/09/2022

Good luck Helen & Andy 

£10.00

Liz Goddard

30/08/2022

Well done, Samantha.

£8.00

Michael boyle

13/08/2022

Raffle

£5.00

Matt jackson

12/08/2022

Alcohol raffle

£5.00

Luke Bills

12/08/2022

Alcohol  raffle 

£10.00

Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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

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Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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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.

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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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Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

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Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

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Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

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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