Reem Waines (one of our lovely board members) has for the second time taken on the #fragileXtraordinary challenge of climbing to Base Camp on Mount Everest, raising awareness about Fragile X Syndrome. Inspired by son Kenz Alusi, this is no mean feat at the best of times, but given that Reem was caught in the 2015 Nepal earthquake on her first attempt her bravery and determination in taking on this challenge is even more admirable!
Fragile X Syndrome is the most common inherited form of learning disability, affecting 1 in 6000 males and 1 in 4000 females in the UK alone. Despite the syndrome being the leading genetic cause of autism, many people – including medical professionals – have never heard of fragile X, or understand its effects. As a result, it is commonly misdiagnosed.
With this in mind, Reem is motivated to climb to Base Camp, raising fragile X awareness every step of the way. Her son, Kenz, was diagnosed with Fragile X Syndrome at 2 years old, and since then the Alusi family have strived to represent the resilience of fragile X parents, as well as the desperate need for international awareness and research.
Through her climb, Reem also wishes to highlight how fragile X is not only the disability of a child, but a group of conditions which can impact on the whole family. There are 160,000 people in the UK who carry smaller variants of the fragile X gene, and therefore may pass Fragile X Syndrome on to future generations. Carriers may experience physical and mental health issues, including premature ovarian failure (FXPOI), and a neurological condition (FXTAS) which causes memory difficulties and tremor in later life.
With the effects of fragile X being so varied, it is so important to raise awareness about the condition, and in turn improve the ways in which the syndrome is understood. We are so grateful to Reem for her invaluable help to spread the word about fragile X, in such an extraordinary way.
Climbing with her is Noelle Hartnett, Kenz’s ABA therapist. Also, Stuart Dickson, their guide who has been working in Nepal for 25 years and does much charity work of his own. Last but not least, Lauran MacCallum from Scotland, and Nicole McMahon from Australia, who are also raising money for projects in Nepal after the earthquake.
UPDATE: Earlier this month they made it! All the Fragile X Society staff would like to say a HUGE thank you to Reem, Noelle, Stuart, Lauran, and Nicole for their awareness raising efforts.
Click here for more pictures of Reem's incredible journey.
You can also find updates using #everest4.
Click here to watch a short video about Kenz, exploring his day-to-day life and the challenges he faces.
Do you have an awareness raising or fundraising idea? If so, we'd love to hear from you!
Give us a call on 01371 875100, or contact fundraising@fragilex.org.uk.