Most parents of a child with Angelman syndrome (AS) would do whatever it takes to create a new, brighter future for their children and a great deal of us choose sporting challenges as our avenue to help, to make a difference. Each week we post new stories of people setting goals and pushing the limits of their bodies to raise money for Angelman syndrome, something I am so very proud to be part of. When we were told our daughter had Angelman syndrome we were pushed so far out of our comfort zone it was hard to imagine life would ever be “normal” again. Now, I almost feel a crazy relief in pushing past that comfort zone now out of choice, telling myself it will be ok, reminding myself those with AS do this every day in their fight with the symptoms of the syndrome. For those who choose to join us on our crusade, I have the utmost respect and gratitude.
Last month I joined a team of these amazing people in a race to raise money for the Foundation for Angelman syndrome Therapeutics (FAST) because of their connection to our daughter Molly. The Great Wheelbarrow Race is a truly unique event held in the Far North Queensland outback that treks 140km (87mi) over three days. This year was the team’s second year racing for FAST but my first year participating (you’d think after watching them hobble off the bus after last year’s event I would have realised what I was in for!).
There were ten of us in team “Heroes with Wheelbarrows”, consisting of five girls, and five guys. The way it works is the first runner starts and sprints as fast as he/she can go for 15 seconds until the crew timekeeper taps the bus driver on the shoulder to beep the horn, signalling the runner to drop the barrow. As the runner drops the barrow the next runner is jumping off the bus to take his/her turn and the retired runner jumps back on the bus to catch their breath. Strangely, the short stint relay works really well, you can get some real speed up in that time, and are left truly exhausted as you return to the bus to recover for the next 2 minutes before jumping off the bus again! It’s really hard to explain, although the bus stops and starts as runners jump on and off, the wheelbarrow is moving almost all of the time so you keep quite a good pace. It’s repetitive, it’s gruelling, it’s painful, the outback sun is hot and it is bucket loads of fun.
To mark the tenth anniversary of the event there were 73 entries, most comprising of 10 member teams but a handful of awe inspiring duos and solo competitors. The complete entourage of approximately 1000 people rolled into remote outback towns with, support crews, tents, truck loads of sports drinks, gels and some with team masseurs (mental note – a must for next year!). Each night in small overcrowded shower blocks everyone is hurting and each morning before dawn the strong scent of menthol sports rubs can’t overpower the excitement & comaraderie. It was something I have never witnessed before; every single person was pushing much more than a wheelbarrow, and for a cause larger than themselves. The winning team, the “Fit Bucks” averaged an astounding 20km per hour with their wheelbarrow (we held a respectable 14kmph), the duo and solo competitors were superhuman and the team with the highest fundraising tally was supporting a young local girl with leukaemia and rose over $110 thousand dollars. The total event raised over $480 thousand dollars for different charities.
I suppose it could be easy to become desensitized to people challenging themselves to reach sporting achievements, I hope not. I hope that as a community we continue to be inspired by those that take that extra steps, run that extra mile, all to create a better future for our children while flying the banner for FAST, whilst also recognising the unseen roles that keep the business of FAST in motion.
The beauty is, you don’t have to pull a muscle or get blisters to help out. There are loads of ways you can be part of the search to find a cure; the most powerful is by telling your story – or the story of the person you care about who has Angelman syndrome, sharing stories and keeping the momentum. Social media and the internet give us a powerful platform to make our voices heard and by following a few tips (below) you can ensure your voice is loud. Most importantly, we need to continually thank those who help us – our superheroes.
So from our family – thank you “Heroes with Wheelbarrows”. Thank you Spiderman, Batman, Robin, Batgirl, Hulk, Superman, Supergirl, Catwoman, Zoro & Zena. Thank you to Joe Vella Insurance whose donation covered the bus hire and incidentals along the way, to our bus driver, support crew and everyone that donated. Over the past two years we have raised almost 11 thousand dollars. Thank you to those who attended our fundraising event and shared links to our page… you have all made a difference, not only to Molly and our family, but to the hundreds of thousands affected by Angelman syndrome around the world.
Thank you to everyone who has supported FAST thus far, and continue to do so. The road travelled in the last five years has been nothing short of monumental for a new Foundation; we have built an army, funded research projects and funded a human clinical trial. We gather from across the world in the windy city each December to celebrate our children, their achievements and our own. We have real hope that our little known disorder can be a thing of the past and we are leaving no stone unturned on our journey. We know the cause, we have different viable approaches to a treatment and we have excellent animal models for testing that show the condition can be cured. The more people that know about our quest, the bigger army we build and the closer we get to the finish line…
Tips to get involved;
- Visit https://www.cureangelman.es/can (https://www.cureangelman.es.au/getinvolved/ in Australia)
- Subscribe to our website for newsletters and email blasts CureAngelman.org (www.CureAngelman.org.au in Australia)
- Whitelist FAST email addresses to make sure our newsletters hit your inbox; info@cureangelman.es & news@cureangelman.es.au (see instructions here or contact us for help)
- Subscribe to our blog and Youtube page
- Like us on Facebook & follow us on Twitter
- By hovering over the “like” button on our page make sure “Get Notifications”, “Show in News Feed” and “Add to Interest List” are checked
- Tell your story; at your school, community association, workplace or to local media
- Hold a fundraiser
- Alert us to competitions, grant opportunities or large donors
- Distribute brochures and direct people to our website
- Volunteer to help
And if you still have the inclination to pick up a wheelbarrow and run, I highly recommend it.