Tag Archives: Williams Syndrome

Students run to raise awareness for rare genetic condition

A group of 25 students from the University of Canterbury are running in the ASB Christchurch Marathon to raise awareness about Williams Syndrome. These students join the thousands of people around the world who help the Williams Syndrome Associations to raise awareness about the condition. The event will take place on 2 June in the Christchurch CBD.

The awareness campaign initially kicked off last year when one of the teams members, George, ran the Queenstown Half Marathon to raise awareness and funds for the New Zealand Williams Syndrome Association (NZWSA) biannual camp. George’s connection to the rare genetic condition stems from his younger brother Henry, who has Williams Syndrome. Henry was diagnosed with the condition when he was 18 months old in 2004. George and his family have been active members of the NZWSA since becoming members of the association 13 years ago in 2005.

This year the biannual camp was held in January at Living Springs in Christchurch. The camp provides the perfect opportunity for parents, siblings and people living with Williams Syndrome to learn more about the condition, make friends and become part of the Williams Syndrome Family. After being commended by a number of members of the association the idea to gather a group of runners to raise awareness about the condition was born.

So, what is Williams Syndrome? Williams Syndrome is a rare genetic condition caused by the spontaneous deletion of 26-28 genes on chromosome #7. The condition is present at birth and affects 1 in 10,000 people worldwide. In New Zealand there are approximately 200 people living with Williams Syndrome. Williams Syndrome is characterised by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features (as seen in the photo), and heart and blood vessel (cardiovascular) problems. People with Williams Syndrome are extremely social, friendly and endearing, they also often have a strong affinity to music.

The condition is still relatively unknown by general public, educators and many doctors. It is hoped that a greater awareness about the condition will help improve the unique challenges the condition can create. For the general public, it is hoped that an improved understanding will help people become more accepting of people with special needs and disabilities. A greater awareness will help educators overcome unique challenges teaching children with Williams Syndrome. A better awareness about the condition will also help doctors complete early diagnosis of Williams Syndrome. This is helpful to provide key resources to new parents of children with the condition.

Along with running and creating fundraising pages, “Williams Syndrome Wednesday” posts have been made to the NZWSAs Instagram (@williamssyndromenz) and Facebook accounts. These posts give people with Williams Syndrome a chance to share a story about what it is like to have the condition. For parents of younger children with Williams Syndrome, these posts show them that like anyone, people with the condition can live meaningful and successful lives. If you would like to check out these posts have a look at the NZ Williams Syndrome Instagram or Facebook page.

The money raised through fundraising will go towards the costs associated with running the bi-annual camps. So far the team have raised a total of over $4200 for the NZWSA. If you would like to support the teams fundraising by making a donation or learn more about the condition, click on the givealittle page link and NZWSA Facebook page link provided below. We currently have less than a week before the end of our fundraising campaign.

Fundraising Page: https://givealittle.co.nz/fundraiser/help-george-run-for-williams-syndrome

Facebook Page: https://www.facebook.com/WilliamsSyndromeNZ/