Help George raise money for NZ Williams Syndrome Camp in 2019
George is Running the 2018 Queenstown Half Marathon to raise awareness and funds for the NZ Williams Syndrome AssociationCanterbury
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.
The next camp is being held in January 2019 at the Living Springs Camp in Christchurch.
These camps are greatly beneficial for people with Williams Syndrome, parents and siblings.
For people with Williams Syndrome,
• This is a chance for people with Williams Syndrome to get together with others who face the same challenges in life and to renew genuine friendships.
• Younger people with Williams Syndrome look up to those older than themselves, and the older ones are eager to fulfill a mentor type role at the camps.
• Information sharing sessions are also held eg relationships and informed consent.
• The adults with Williams Syndrome also enjoy hearing speakers discussing the genetics and/or health issues.
• For parents with newly diagnosed children, these camps are extremely important. It is difficult to fully describe how much the camps provide ‘sanity’ to the mad world they find themselves in.
• The support of others who have been in the same situation
• Learning more about Williams Syndrome and how to work through issues. International and domestic speakers discuss a variety of topics including health, education, relationships, genetics and available services.
• The ability to relax knowing that your child is in a safe place, surrounded by people who fully accept them (this simply can’t be under-estimated)
• The reassurance of seeing the awesome people with Williams Syndrome and knowing that despite the challenges, there are also positive things to look forward to.
Siblings also gain from the camps. Being able to interact with their peers, they informally support each and share experiences of living with a disabled brother/sister. For some this may also be their main opportunity to socialise without being embarrassed of, or having to support, their sibling.
About Williams Syndrome
Williams Syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized 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.
For more information, check out our website, like our facebook page or follow our Instagram page
williams-syndrome.org.nz || facebook.com/WilliamsSyndromeNZ/ || @williamssyndromenz
George Stilwell's involvement (page creator)
I'm participating in the Queenstown Half Marathon and am raising funds for Williams Syndrome, a rare genetic condition. It's great to spread the word about this and raise some funds to help the 30 families from around New Zealand who are attending the national camp in Christchurch next year.
Thanks Shayne! All good mate, congrats on completing your first marathon!
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This page was created on 13 Sep 2018 and closed on 19 Nov 2018.