Pierre Robin Australia (PRA) The VMMA was has been invited by Bro. Mick Cannon to assist with the setup of a new organisation to be named " Pierre Robin Australia (PRA).   I am pleased to announce that the VMMA has received a donation specifically to cover the costs detailed below to set up this worthy charitable organisation, payment has been made to cover the costs.   VMMA Inc. President Chris Wells - 31st July 2008   Background Information provided by Bro. Mick Cannon My son Balin was born with a rare genetic disorder called Pierre Robin Syndrome/Sequence. He spent 6 months in intensive care as a new born and will require several operations and frequent hospitalisation throughout his life. This months New Idea Magazine has published an article on him and the support that we have received from Ronald McDonald House during his hospitalisation. (See Flyer Information Sheet)   Pierre Robin Australia (PRA) The organisation will be called Pierre Robin Australia (PRA) however we are authorized to trade as Who’s Pierre? PRA will be an Associated Incorporation. As an Incorporated Entity PRA is a non-for profit community tax concession charity. Pierre Robin Volunteers will legally be able to participate in fundraising initiatives as the charity is a registered Fundraiser under the Fundraiser Appeals Act 1998.  PRA will be responsible for fundraising, accessing grants, maintaining a website and effectively communicating with people involved with the care of persons with Pierre Robin Syndrome or Pierre Robin Sequence.   However In order for us to achieve registration we need to apply for an ABN, Association Incorporation Registration, Registered Business and domain name well as other forms of registrations.   To do so I am required to coordinate a steering/executive committee. This committee will be made up of families, community organisation, volunteers and health care professionals. We currently have 8 potential members including family and friends as well as community volunteers who are involved with Balins care. I have also joined the CelftPals committee of Victoria as a cleft palate is one of the conditions associated with the disorder. All members are volunteers. 100% of the proceeds will go directly into the community.   My reason for contacting you is the hope that VMMA may be interested in helping us get off the ground by making a donation to assist us in meeting these initial costs.   These monies will pay for all of the required registrations that will enable us to trade/apply for grants and accept donations.   The following registrations and costs are as followings: Australian Business Number -      $  Free (No cost) Application for Fundraiser Reg-   $ Free (No Cost) Assoc Incorporation Reg-             $  56.80 Business Name Application-         $  79.50 Domain Name Registrations-         $198.00 Total:                                                $334.30   Please speak with your committee and let me know how the Victorian Masonic Motorcycle Association can assist us in this very worthy coarse.   Fraternally   Bro Mick Cannon Mobile: 0418553349 Home: 03 87511174