NF2 BioSolutions UK & Europe

5K for 5 Years - A NF2 community charity fundraising event In May 2025, NF2 BioSolutions UK & Europe celebrates our incredible milestone birthday of 5 years. What an incredible journey it has been so far, with several NF2 research projects all under way with the ultimate aim of finding better treatments for those living with NF2. We have collaborated with many other organisations. We have a worldwide presence & following on social media which has grown from nothing. Leveraged the curriculums in universities to ensure our next generation of students and doctors are aware of rare diseases and NF2. Enormous achievements in such a short time, Our unique points are that everyone in our organisation has LIVED EXPERIENCE of NF2, we speak to those within our community to gauge exactly where we need to go and exactly what we need to do. We are all volunteers. Any funds raised and spent go towards our mission – for new treatments to NF2. We are solely focused on NF2 – Awareness, advocacy and research for patients and their families. Yo help us celebrate we would like to suggest a NF2 community fundraising event called 5K for 5 years. The 5K can be anything you would like, running, walking, jogging, scootering, cycling … or whatever! YOU Choose! You choose the location too – and raise the funds. Can you get family and friends or a group to do the challenge with you? Can they raise funds too ? Fundraising packs available! NF2 Awareness Day is on 22nd May 2025 and NF Awareness month is throughout May 2025, ideally plan your 5K (or group 5K) for around this time. It would be great if we can get a collage of picture or videos to publish on NF2 Awareness Day. 5K too much of a challenge???? – then scale it back to what is achievable for you, 5 lengths in the pool, 5 laps around your local park. 500 steps or 5000 steps – We would love you to take part with whatever you feel you can manage – seriously if that’s just 5 cups of tea then its all relative Any questions? Email or message jo on joanne@nf2biosolutions.org Together lets #ENDNF2

Wishing all the mums out there a lovely day. The NF2 mums, grans, aunts, sisters and cousins, The mums, grans, aunts, sisters and cousins of NF2 Warriors. However and whoever is affected by NF2, We send you lots of love xxx #endNF2 #NF2awareness #neurofibromatosistype2 #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #mothersday

Its time for Saturday on the blog! and our next instalment of Avastin Diaries. There has been a few ups and downs again with treatment & scans etc. It seems a long time since our last update too! We also reviewed the heat pad gloves you can see in the picture here! So put the kettle on and read how things are going. https://lnkd.in/e8aep-Px #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Everyone at NF2 BioSolutions and NF2 BioSolutions UK & Europe appreciate all the support given as we continue to make strides in research for new treatments. NF Awareness month and NF2 Awareness day are upcoming in May and we are thankful in advance for all your support, no matter how big or small.

After many years of hard work our paper entiteled 'Targeting MERTK on tumour cells and macrophages: a potential intervention for sporadic and NF2-related meningioma and schwannoma tumours' authored by Foram Dave, Kevin Herrera, Alex Lockley, Laurien L. van de Weijer, Summer Henderson, Agbolahan Sofela, Laura Hook, Claire L. Adams, Emanuela Ercolano, David A. Hilton, Emmanuel A. Maze, Kathreena M. Kurian, Sylwia Ammoun, and C Oliver Hanemann. HAS BEEN PUBLISHED IN ONCOGENE!

Interesting read here!

Thankyou Adam P Jones for your amazing work 🙌 👏

Our preprint “Lysosome positioning affects NLRP3 inflammasome activation” is out! Excited to share the work from my PhD project. Big thanks to the amazing scientists who collaborated on this study!

What a great start to the Rare Disease Research UK conference! Thank you Prof William Newman for introducing the MRCC & RDRUK research centres, known as “nodes”, that aim to transform Rare Disease research & improve the lives of people who are directly or indirectly affected by Rare Diseases. RDRUK EpiGenRare RDRUK ELSI RDRUK REOLUT

There really is no better time to support our charity. Research is key to developing new treatments and to finding a cure for those affected by NF2. With your help we can fund vital research and change the lives of adults and children affected by NF2 but we cannot do it without your support. NF2 is a rare genetic disorder affecting approximately 1/35,000 children & adults globally across all races, ethnicity, and genders. Patients are born with NF2. NF2 results in the growth of multiple tumours throughout the central (brain/spine) and peripheral (organs/limbs) nervous systems, including schwannomas, meningiomas, and ependymomas. Our research will help combat the growth of Vestibular Schwannomas and Meningiomas, improving wellbeing and quality of life enabling those affected to live thier life without fear or anxiety of where the next tumour will grow. You can support our charity by donating )https://lnkd.in/euWUGuTS) getting involved in fundraising, or simply following us on social media. Donate via our website: https://lnkd.in/eB_W2G7d #nf2biosolutionsuk #ineedacure #makeadifference #changinglives #strongertogether #endNF2 #NF2awareness #neurofibromatosistype2 #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2lifeexpectancy #nf2research #nf2ismyteam #nf2awarenessday #nf2journey