www.sanfilippo.org.au
-Press release-
Violet Diamond Gala Ball: A Rare Diamond for a Rare
Disease
We are thrilled to annou...
www.sanfilippo.org.au
The Sanfilippo Children’s Foundation aims to bring the trial to Australian
shores to enable Australi...
www.sanfilippo.org.au
of 3

PRESS RELEASE_VioletDiamonBall_ March 2015

Published on: Mar 4, 2016
Source: www.slideshare.net


Transcripts - PRESS RELEASE_VioletDiamonBall_ March 2015

  • 1. www.sanfilippo.org.au -Press release- Violet Diamond Gala Ball: A Rare Diamond for a Rare Disease We are thrilled to announce the first ever gala to raise money for the Sanfilippo Children’s Foundation, the Violet Diamond Gala Ball. This black- tie event is being held in Melbourne on the evening of Saturday the 2 May and will be hosted by MC, TV news journalist, Sonia Marinelli (Channel 9). Sonia ran a special report on the Sanfilippo Children’s Foundation and upcoming Gala Ball, which recently aired on Channel 9 news. See: https://www.youtube.com/watch?v=ZuW_G4fe4tQ It is said if one is fortunate enough to lay eyes on a Violet Diamond in their life time; one is truly blessed, as they are so rare. First discovered in the 1980s, violet diamonds are indeed a natural wonder. The symbolism of the violet diamond resonates with the Sanfilippo community, as this precious stone is as rare and beautiful as each child battling Sanfilippo Syndrome. There are an estimated 50 cases of the condition in Australia. But each year, around the world, 2,000 babies are born with this devastating disease. Mucopolysaccharidosis III (MPS III), also known as Sanfilippo Syndrome is a rare genetic condition that causes fatal brain damage. It is a serious degenerative condition affecting children, and for which there is currently no effective treatment or cure. Life expectancy for children with the condition is just 12-20 years. As the condition affects only 1:70,000, there is little commercial interest from big pharmaceuticals and no government funding. But there is Hope. Hope in the form of a pioneering clinical gene therapy trial due to start at Nationwide Children’s Hospital in Ohio later this year.
  • 2. www.sanfilippo.org.au The Sanfilippo Children’s Foundation aims to bring the trial to Australian shores to enable Australian children equality of access to this emerging treatment as their European and American counterparts. It is also on Australian shores that the Violet Diamond originates. It too comes from a place of great beauty, the world’s biggest pink and purple diamond mine (Argyle) in the East Kimberly region in the remote north of Western Australia. Held in the San Remo Ballroom in North Carlton, Melbourne, guests at the Violet Diamond Gala Ball will be treated to touch of old-world glamour with a live band, red carpet photographer, live and silent auctions, and a three-course dinner. Sponsorship packages are available, which include brand presence on the website, social media, plus a huge thank you on the evening and an opportunity to display pull-up signage in the foyer. If you know any business that would like to assist with seeking sponsorship or donate a prize for our prize pool, please contact gala organiser Renee Steel at Renee.Steel@live.com.au or phone 0407 307 446. Tickets are $160 pep or tables of 10 are available for $1,400 and on sale at: www.sanfilippo.org.au/violet To learn more about the Sanfilippo Children’s Foundation, or to make a donation visit: www.sanfilippo.org.au. You can also follow the foundation on Facebook www.facebook.com.au/sanfilippochildrensfoundation and Twitter https://www.twitter.com/SFCFoundtn -ENDS- For all media enquiries please contact Ingrid Maack ingrid.maack@sanfilippo.org. au 0422 656 465 or Megan Donnell megan.donnell@sanfilippo.org.au
  • 3. www.sanfilippo.org.au

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