Last month, Feb 20022, we invited you to join us to Move for a Cure. Our goal was to cross the country from Perth to Cairns in 30 days, starting on International Angelman Day. This journey across the country was to symbolize our commitment to bringing treatments to every Australian family impacted by Angelman syndrome, in Australia.
This month saw many households battle and isolate with Covid19, severe weather and devastating flooding and despite, (or in spite of that), we have come together to show what can be achieved as a group.
We had over 100 participants walking, riding, running, cycling… to achieve our goal of 4693km. When the challenge was completed, our total km’s were 6934, effectively we got to Cairns and then headed down through Brisbane, past the Gold Coast all the way to Port Macquarie in NSW!
There were five outstanding participants and groups and we share their stories with you below.
Paul Yeo – Sufferfest Training
Paul clocked 361km during the 30 days in training to prepare for the Wahoo Sufferfest Knight of Sufferlandria Challenge.
At the end of the 30 days moving for a cure, Paul went one step further competing in The Knighthood Challenge, requiring completion of 10 gruesome Sufferfest cycling workouts back-to-back. Think of this as the spin class from Hell!
We are so proud of him absolutely smashing out each workout as well as keeping us up to date with live videos along the way. An absolute champion! Well done Paul and thankyou for your efforts. We couldn’t be prouder of our fellow Angelman parent!
Alicia – In support of Molly Cross
Taking it upon herself to move for a cure, spreading awareness for AS and raising funds for FAST, Alicia had one beautiful girl on her mind.
“Molly Cross is the reason I moved for a cure in 2022. Molly’s parents are dear friends of mine. Just after Molly turned one, she was diagnosed with AS and it changed their lives forever. The Cross’s are incredible people and the least I can do is get off my privileged butt to spread the word about AS and try and raise a bit of money for research and treatments that will help Angels and their families to have a better quality of life. I can’t think of a better reason to get outside, breathe in the fresh air and move my body. For 130km in fact!”
We are incredibly grateful and would like to thank Alicia on behalf of the Cross family and extended Angelman Community. Your thoughtfulness and selflessness, we are all deeply grateful for.
A huge congratulations to all the 19 family, friends, carers and neighbours forming Team Frankie who ran, walked, rowed and cycled their way across the country.
Mention must be made to Frankie’s uncles Mark and Matthew exhibiting a little sibling rivalry, with Mark moving 624km in Brisbane and Matthew Lee travelling 704km in Darwin. Together they clocked up over 1300km on their bikes.
An incredible effort to pull together such a colossal team, crushing the km’s all the way across the country all in honour of Frankie and finding a cure for Angelman Syndrome.
Jessica – Adeline’s Mum
When your child has Angelman Syndrome, you Move as much as you can for a Cure for your beautiful daughter. This was proven by the stunning Jessica Sengstock, Mum to Adeline. Here’s what she had to say on her motivation for Moving for a Cure:
“Move For a Cure came at the perfect time for our household. We had just moved from NSW to the ACT and joined a Health & Fitness Centre near our new home. I have struggled with my weight for as long as I can remember. I lost a lot of weight a few years before starting a family but sadly gained half of the weight back following Adeline’s diagnosis. My old bad habits crept back in, especially during the night when I was awake with Addy.
Coincidentally Addy is now my main inspiration for wanting to lose the weight and keep it off. I need to be fit and strong enough to help her with her day-to-day needs, and I want to be here with her for as long as possible.
I had been watching my food intake since mid-December, but Move For a Cure got me in the gym. On Wednesday, Thursday and Friday ( my child free days) I do 3km on the Cross trainer followed by 2kms In the pool. A habit I intend to maintain, but I have made other lifestyle changes as well.
Recently Dale and I managed a weekend away and instead of taking the light rail around Darling Harbour and the city, we walked.
A cure for Angelman Syndrome was the motivation I needed to get serious. I have a way to go on my weight loss journey but I am very pleased to be 12 kilos closer to my goal.
A big Thank you to everyone involved, our organisers, my sponsors, family & friends who joined in and especially Addy and all the people who kept me motivated.”
Sebastian and his Class
When Sebastian who has Angelman Syndrome took on the Move for a Cure challenge in his wheelchair, all seventeen of his classmates thoughtfully put on their blue shirts and did their bit to help Sebastian. They all looked very much the part in their cool blue “Move for a Cure” T-Shirts.
An incredibly admirable gesture by some kind and thoughtful children and we are honored that you chose to support Sebastian and all of those living with Angelman Syndrome.
Three cheers to Sebastian and his class!!