Help Alex Raise Awareness and Funds for the NZ Williams Syndrome Association

This year I am running the 2019 ASB Christchurch Half Marathon to raise awareness and funds for the NZ Williams Syndrome Association. I was first made aware of Williams Syndrome in 2019 after becoming friends with George Stilwell. George gives a lot of his time to promoting and developing the Williams Syndrome NZ community, which supports people with the condition. After seeing what George does and the impact he has on the Williams Syndrome community, I thought the least I could do was run a few miles and set up a fundraiser. I hope that by raising awareness of Williams Syndrome in the community, people will become more accepting of everyone who makes up our greater community.

About Williams Syndrome

Williams Syndrome is a genetic condition that is present at birth and can affect anyone. It is characterised by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

Williams Syndrome affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States and 200 in New Zealand. Many babies may have life-threatening cardiovascular problems. As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge.

As adults, most people with Williams Syndrome will need support to live to their fullest potential. As people with Williams Syndrome mature, they often experience intense isolation which can lead to depression. They are extremely sociable and experience the normal need to connect with others; however people with Williams Syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.

Funds raised through this event will go towards the expenses associated with running biannual Williams Syndrome camps. Every two years the NZ Williams Syndrome Associations (NZWSA) holds a national family camp. This is the primary ‘gathering’ for the group and is eagerly anticipated by the members of the association. The camps are usually attended by 120 – 180 people. These camps are greatly beneficial for people with Williams Syndrome, parents and siblings.

For more information about the condition, check out our website, like the Facebook page or follow the Instagram page

williams-syndrome.org.nz || facebook.com/WilliamsSyndromeNZ/ || @williamssyndromenz

Each week a new post is make sharing a story of someone in New Zealand living with the condition.

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