Ben Nevis the Highest Peak in the UK, 1345 meters above sea level, and our charities #ZeroToHero challenge this year. None of our ROHHAD children or adults will ever be able to physically summit Nevis itself or touch the clouds that often surround its peak so we have made a promise to them all that we will do this for them. We hope that by doing so we will also be able to help raise desperately needed funds for Medical Research into ROHHAD.

ROHHAD is a rare terminal disease that affects less than 1 in 73 million people worldwide. It is debilitating and seriously impacts on the quality of life for the children diagnosed. They battle daily with symptoms and spend a lot of their life in hospital undergoing invasive tests and treatments. There is no cure at present however our charity raises funds for medical research and we are key members of the newly formed ROHHAD International Consortium. Our mission is to work strategically and collaboratively as clinicians, researchers, charities, and families by raising awareness, expediting diagnosis, optimising care, and ultimately finding a cure for ROHHAD, A rare Orphan Syndrome.

Our teams will climb Nevis in August this year over two separate weekends. The two dates are Saturday the 7th of August and Saturday the 28th of August 2021.

One of our Inspiring ROHHAD warriors Jasmine who is 6 years old has joined our team. She cannot safely summit the mountain itself but she is going to attempt to summit it at home by walking the 17km distance to the summit and back again on her treadmill over a few weeks. Jasmine is our team leader on this and her and all the ROHHAD children will inspire us on the day. Jasmine will also be joining us virtually hopefully as we reach the highest point of the UK.

Please show your support and sponsor our teams. Every penny donated will go towards ROHHAD Research.

We are still open to others joining our Nevis teams too. If you would like to join the team contact Lisa at the charity office via rohhadassociation@gmail.com for more details.

For anyone who wants to help but like Jasmine and the other children cannot climb a mountain for health or physical reasons, you can still complete a #ZeroToHero challenge as your in control, you can choose the distance the sport and set your own challenge. You can use walking aids or complete in your wheelchair too like our very own #AaronMan and Julie both ROHHAD Warriors have done in the past.

Thank you to all who help either via sponsorship or by joining the team.

We cannot wait to #GoMadForROHHAD Climb Nevis and Together with your help and support we will #FindACure