Thank you to all those who attended our Annual General Meeting on November 9th this year. It was great to catch up with everyone at the Neutral Bay Club where we were generously given a place to meet once again. The highlight of the meeting was the discussion surrounding congenital CMV led by Professor William Rawlinson AM, Director of both the Virology Research Laboratory and SEALS Microbiology (Virology division), The Prince of Wales Hospital, Randwick.
In reviewing our activities we have had a thought provoking year. Steady organic growth has allowed us to build a stronger foundation so that could better understand where our priorities and focus should be, in turn putting us in a better position as we move forward.
Following last years AGM at The Neutral Bay Club we held our very first fundraiser, Barefoot Bowls for Bubs. It was extremely profitable with $880 being raised and from all accounts everyone had a great time – particularly those who were lucky enough to be the raffle prize winners! Thank you again to everyone involved for your support and making it such a successful day.
As we let go of our Crazy Domains website at the end of last year we have solely relied on engaging people through Facebook with a public fan page and a closed parent to parent support group which now has 77 members who are predominantly made up of congenital CMV mothers.
Although it took some time the Cytomegalovirus (CMV) and pregnancy fact sheet which we were involved in putting together with Bill Rawlinson from the Research Virology Laboratory in Randwick and the NSW State Health department was finally completed and can now be found on the NSW Health website. I have also created a 6 leaf folded DL flyer from this fact sheet which everyone can download in PDF format to print and distribute. I can email it to anyone who wishes it to be sent to them however it has been uploaded to Facebook and it will also be available on the new website to download and print.
Unfortunately the proposal which we were assisting the VRL with at the end of last year for a grant from the National Health and Medical Research Council for research into “Reducing hearing loss through prevention and treatment of cytomegalovirus infections” was unsuccessful however we look forward to continuing our support in future cCMV Research as we see this as an important role for us to take on.
In September this year we received a very generous offer through one of our newer members, Pamela Mears. Her parents own the Hotondo Home Builders franchise in Goulbourn where Pam also works. On hearing the news that Pam’s son, Christopher, had congenital CMV the head office of Hotondo Homes decided to show their support by raising money for the Congenital CMV Association at their National Conference in Melbourne at the end of September. Due to our association not having charity status as yet I recommended they raise money to help fund cCMV research at the Virology Research Laboratory at Westmead Children’s hospital in Randwick and forwarded the information they required including the cCMV and pregnancy fact sheet. Hotondo consequently raised funds in the vicinity of $10,000 – a fantastic effort which will certainly be put to great use. On top of this they have also donated a number of items, including a new barbecue, watches and a tennis racket, for our association to use for fundraising. Trish Meares has kindly offered to mind these until we are ready to organise this. In discussion with Bill Rawlinson we are planning a combined media event to raise awareness in February where we plan to formally thank both Hotondo Homes and the Meares family for their donations.
With the resignation of both Jane Russ and Alex Allen from our board I’d like to whole heartedly thank them for their time and effort as secretary and general member over the past 2 years. I am very grateful for their continuing support of our association.
I would also like to warmly welcome our new members to the board – Pam Meares has volunteered for the role of general member and Tracy Carroll has volunteered for the role of secretary. Both Pam and Tracy are mothers of children who have been affected by congenital CMV and I look forward to working with them both.
Our goals in moving forward will consist of the following:
- Our revised constitution will be submitted to the Department of Fair Trading and following this being processed our application for Charity Status will be submitted.
- We have acquired the services of Mr Wayne Pryor CPA, partner of Isis Partners Pty Ltd in Thornleigh, to audit our accounts. Our tabled treasury report will be sent to Wayne next week and pending the audit being completed I will submit our renewal for a Fundraising Licence for the next two years.
- We are in the process of developing our long awaited new website through Fishvision which is very exciting. The website will be the central point from which we will drive all of our activities. This project is generously being funded by our association members, Sam Ghoreyshi and Jane Clayton for whom we will be forever grateful. One of the many highlights of the new website will be a merchant facility in order to receive donations and sell awareness/fundraising products. We are looking forward to launching the website in early January 2015.
- To coincide with the launching of our new website we will also set in motion an awareness campaign to STOP CMV with a petition directed towards both the state and federal ministry for health and RANZCOG (Royal Australian and New Zealand College for Obstetricians and Gynaecologists) requesting ALL women be counselled about congenital CMV at their prenatal and antenatal appointments. We hope to inspire both the ministry for health and RANZCOG to come together in unison with the hope that the ministry for health will fund the distribution of congenital CMV and pregnancy information flyers to help counteract the time constraint difficulties faced by our medical professionals at appointments.
- We have an awareness video close to completion which conveys solidarity amongst affected families, early intervention organisations and medical professionals to STOP CMV. This will also be publicly revealed as a part of the website and awareness campaign launch. The song backing the video is one which was very kindly donated to us along with licensing rights by the AIPP (Australian Institute of Performing Arts) based in Artarmon. This is very exciting as it means the song can be uploaded to itunes to generate funds for the association. Further to this we are very fortunate to have an opportunity to cultivate our new connection with the AIPP and it’s highly talented students with the very generous offer of another song to suit our needs in the future.
- As you will all be aware the 5th International Congenital CMV Conference is being held in Brisbane from Monday 20th to Friday 24th April 2015. I am honoured to have been invited to do the first keynote talk along with Janelle Sargeant Greenlee, the president and founder of the US organisation Stop CMV. I am also excited to let you know that I have been invited to attend the Satellite Consensus Recommendations meeting which is being held the day before the conference on Sunday 19th April. I hope there will be a good representation of families who have been affected by cCMV attending the conference. I will be organising a registration of interest to be made available through Facebook and our new website, once it has been launched, and I will be hosting a Congenital CMV luncheon for those who are there.
We have a lot to look forward to in the coming year with our aspirations on applying more focus on specific attainable targets and I believe the foundation for this will come from our new website, www.ccmv.org.au
I’d like to take this opportunity to thank my fellow board members, advisors, members, family and friends for your continued support. I feel privileged to know you all and share our dream to one day see an end to the devastation caused by congenital CMV.
I wish you all a very Merry Christmas and a Happy and safe start to 2015.
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