Driven to make a difference
A team of 11 adventurers has driven 7,000 miles over hostile terrain to fundraise for research into autism, fragile X syndrome and intellectual disabilities. We spoke to team leader Gus Alusi about the motivation behind their efforts.
Why did you become involved in fundraising for the University’s research into autism, fragile X syndrome and intellectual disabilities?
When my son was diagnosed with fragile X syndrome, our lives were completely changed. My wife Reem and I had more questions and concerns than could be answered, and we soon realised that there was scarce research being done on the condition, despite it being the most common form of inherited mental disability and a leading genetic cause of autism.
We were looking for answers but at the same time wanted to do something to help accelerate the research. We looked to the USA where Mike Tranfaglia, head of the FRAXA Research Foundation, told us about a research group at the University of Edinburgh headed by Professor Peter Kind. So I contacted Peter by email and asked him if we could raise money for his research. I suspect that he was initially shocked, but he eventually believed us and the story began.
Tell us about some of the fundraising events you have organised.
Our first fundraising effort was a climb of Mount Kilimanjaro in 2008 with 12 of our close friends and supporters. We called it Kili4x and we raised a staggering £60,000, a figure that surprised and heartened everyone.
This is where it all started. The University embraced us into their fold and sought to establish a neuro-developmental research centre. They invested in their people and we were inspired to do more.
Soon, we organised other events including Fabric4X in 2010, which saw 18 performers, bands and acts perform at the famous Fabric night club in Clerkenwell. Then we came up with the idea of crossing the Sahara Desert in old cars. 19 people in seven cars joined us to travel across the Western Sahara to Timbuktu, in the heart of Mali.
As news travelled of our efforts, various people got in touch with their own ideas. These included my friend’s son Luke Papini, a musician in a band called Loose Hearts, who decided do a ‘shave off’ prior to chemotherapy treatment. He then gave me a CD of his lastest album which in turn inspired us to host Hearts4X in 2013, a music concert raising both awareness and funds, and featuring Luke’s band.
Each time I remember these events it genuinely moves me as I think of all these people who wanted to help us with our quest to raise funds for research into Fragile X syndrome and to raise awareness of the condition.
Do you have any personal highlights?
Reem and I were and always had been a low profile couple, but we realised that we had to sacrifice that privilege to achieve our goals. In late 2013, we organised another event, 3peaks4X, centred around climbing the three highest mountain peaks in Scotland, England and Wales, which attracted 7 teams of 3-4 each.
The goal was to complete all three in under 24 hours – a truly exhausting but wildly exhilarating competition, especially when seeing how many people joined our effort.
In 2014, and on his 50th birthday, Gus trekked up to the Base Camp of Mount Everest with five friends as part of the Everest4x trip – the first time that social media was to raise awareness of the condition. Reem repeated the feat in 2016, even holding an impromptu Burns Night celebration while she was there in order to raise money for a local orphanage.
You recently embarked on Silk4x – your most ambitious challenge to date. How did it go?
Our most recent challenge was in April of this year when we drove along the old Silk Route to Tashkent, in Uzbekistan. This challenge will see us driving between eight to ten hours a day over very tough terrain. We covered approximately 7,000 miles, making our way through France, Germany, Austria, Serbia, Turkey, Georgia, Azerbaijan, Turkmenistan and Uzbekistan.
We called the trip Silk4X and raised over £40,000, which the University has graciously matched. These funds will pay to appoint two PhD students who will research gene therapy for fragile X syndrome.
I’m still recovering from that grueling trip, but the support has made it worthwhile. Reem and I constantly worry about Kenz and his future, and want to be able to help him and other children with similar conditions. We’re extremely lucky to be supported by friends and family, and, of course, a formidable academic institution like the University of Edinburgh.