Fragile X Board nomination form

Fragile X Association of Australia is calling for nominations for new Board members to be voted on to the Board at our Annual General Meeting on Sunday 9 October, 2016.

It is important that we have a strong Association to provide a national voice, ensure appropriate services and advocate on behalf of the Fragile X community.

We’re seeking Board members whose motivation, skills and contacts will extend our capacity to deliver supports to our community in line with our strategic plan.

There will be several changes to the Board this year. Robyn Iredale’s term as President is due to expire at the AGM and she will step down. Robyn says “I have found being on the Board to be very gratifying but after 13 years I feel that it is time to open up space for new Board members.”

Bruce Donald, our Treasurer, is also finishing his current term. This is Bruce’s second time on the Board and he has played an important role as Treasurer and advisor on many matters.

Treasurer role and General Board Members

We’re seeking a Board member who will take on the role of Treasurer and several other Board members who have a diverse range of skills in areas such as business/finance, fundraising, marketing, social media.  Above all, we are seeking Board members who have a strong commitment to serving and supporting the Fragile X community.

Judith Lenart (Sydney), Cathy Love (Melbourne), Graham Hook and Nyleta McRae (Brisbane) will continue to serve on the Board.  We would love to have Board members located in other states/territories.

For information about what a Board role involves, click here

To nominate for the Board, please complete the attached form, and return to wendy@fragilex.org.au
Nominations must be received by 5pm Friday 10 September

FXAA Board nomination form 2016

Annual General Meeting, Sunday 9 October, 2:00-3:00 pm

The AGM will be held on Sunday 9 October in our office in Manly:  Suite 6, Level 3, 39 East Esplanade, Manly.  We hope you can join us for afternoon tea afterwards.   (RSVP: support@fragilex.org.au or 1300 394 636)

If you’re outside Sydney and would like to join the meeting, please skype in or join by teleconference call.

If you would like more information on joining the Board or about the AGM, please get in touch with Wendy:  wendy@fragilex.org.au 1300 394 636

 

 

Posted in Uncategorized | Leave a comment

Interested in helping to lead Fragile X Association?

fx posters pic_from June newsletter
We’re a small member-based not for profit organisation, working towards the best possible lives for families affected by Fragile X.    We’re currently looking for more people to join our Board as directors. 

Fragile X Association of Australia Inc (FXAA) is a small member-based not for profit organisation, working towards the best possible lives for families affected by Fragile X.

We’re governed by a motivated group of volunteers who use their skills to ensure that FXAA strengthens the Fragile X community, provides a national voice for our community, engages with the science, and secures the future for our organisation.

Who are our Directors?

Our Directors come from a range of backgrounds, and have diverse skills. Some Directors have a personal link to Fragile X (such as having children or relatives with Fragile X); others have a strong interest in supporting families affected by Fragile X.

What are we looking for in a Director?

We need people who are passionate about supporting and serving the Fragile X community, and who share our vision!   We’re seeking directors from all states.

Skills and experience that would be an ideal supplement to our current team include:

  • Business or finance experience – treasury role, risk management, governance
  • Fundraising expertise
  • Marketing skills
  • Social media skills
  • Knowledge of intellectual disability or genetic disorders
  • Strong interest in Fragile X-associated disorders
  • NDIS experience

Our Board

Our Board has a maximum of 8 Directors at any one time.  Directors are unpaid volunteers and are elected to the Board for 2-year terms. They attend the Board meetings held 6 times per year (in person or by conference calls) and the Annual General Meeting, as well as some of our events.

The Board has several committees with a specific focus, including FX science and research, the FXAA Endowment Fund, and organisational sustainability. These committees involve Board members and general members of the Association and meet regularly, in person or via conference calls.  An Executive committee of 3 Board members meets monthly to oversee detailed operations and receive reports from our small team of paid staff.

FXAA is a registered charity, incorporated in NSW, and governed by our Constitution. Our Board has independent control over, and legal responsibility for, our management and administration. Directors have some key duties and responsibilities under the auspices of the Australian Charities and Not-for-profits Commission, the NSW Department of Fair Trading, and state-based fundraising licensing authorities.

If you’d like to find out more about becoming a Director of Fragile X Association, we’d love to hear from you.

Please contact Wendy Bruce, Executive Officer:  1300 394 636 or wendy@fragilex.org.au

pdf version of this advertisement:  FXAA_Directors for Board_August 2016.docx

Posted in Uncategorized | Leave a comment

Fastest Half Marathon in a Suit

(c) Drew Gigg, Yet Another Idea - Tozer on the run_crop

On July 31 2016, Sydney long distance runner Mike Tozer broke the world record for running a half marathon in a business suit. He was one of 600 athletes taking part in the Westlink M7 Blacktown Running Festival, but the only one who was dressed in a 3 piece suit.

The run was his second attempt at the record, after agonisingly missing out by seconds at the Sydney Half Marathon. This time he ran a more even paced race and finished in 1hr, 18 minutes and 10 seconds, taking three seconds off the previous record.

13177719_10154090320325915_7326586577252746021_n

He made the attempt to raise awareness of fragile X syndrome, a genetic condition which affects his son. Mike says that “For me the suit is a metaphor for the condition. Running with the suit is like having someone pushing back and down on your shoulders. It’s tough. It holds you back. But it’s nothing compared to the daily challenges faced by those with fragile X.”

Mike has also been fundraising for Fragile X Association.  In the leadup to the Sydney Half Marathon in May he succeeded in raising over $4,000 for the work of the Association in supporting families across Australia affected by Fragile X.

(c) Blacktown City Council_crop

Posted in Uncategorized | Leave a comment

Raffle winner!

The winner of the Fragile X Fundraising Raffle 2016 was L Bradley from Brisbane.
The winning ticket was drawn in the Fragile X Association office in Manly on 9 August – drawn by Ian from DHL in the Manly area.

Many thanks to DHL for their support in transporting the prize from Sydney to Brisbane at no charge.

 

 

 

 

 

Posted in Uncategorized | Leave a comment

Women’s Health and the Fragile X Premutation

Some carriers of Fragile X may experience health issues, including  early menopause (FXPOI)

This booklet is designed to encourage women who are Fragile X premutation carriers to take control of their own health and to pass on this information to their families and if needed, health care professionals.

Based on current research, it covers topics such as the pattern of Fragile X inheritance in families, the importance of knowing your Fragile X status and CGG repeat count. It also covers FXPOI, FXTAS and some information on family planning.

FXAA would like to thank A/Prof Graves Allen and Emory University in Atlanta, Georgia, for making this resource available to us.

Copies of this booklet can be downloaded here.  Printed copies are also available from Fragile X Association of Australia support@fragilex.org.au or call 1300 394 636

FINAL PM materials 12.13.15 short

Attribution: Produced by Emory University Department of Health Genetics, through funding from the National Fragile X Foundation (US) and the Fragile X Associate of Georgia.

Many thanks to Emory University for permission to to make this booklet available via Fragile X Association of Australia.

 

 

 

 

 

Posted in Uncategorized | Leave a comment

Study to screen 100,000 Victorian babies for Fragile X syndrome | news article

On Saturday 9 July The Age newspaper in Melbourne featured a story on Fragile X syndrome.

Dr David Godler, from Murdoch Childrens Research Institute is running a very large study to assess the feasibility of including Fragile X syndrome in the newborn heel prick test for babies. The article also featured the Jones family, who have a son, Jimmy, who has Fragile X syndrome.

Extract from the article:

“A groundbreaking test for fragile X in newborns has been developed by a team at Murdoch Children’s Research Institute, and after positive early trials, it is now being used in a pilot study to screen 100,000 Victorian babies.

 

Researchers are using robots to trial the test on blood spots from the heel prick test newborns have at birth to be screened for other conditions, including phenylketonuria, hypothyroidism and cystic fibrosis.

 

Geneticist David Godler hopes the $800,000 study will pave the way for the test to be permanently incorporated into newborn screening, which would mean parents of fragile X babies know within days, not years.”

Link to full article on The Age website:

http://www.theage.com.au/victoria/fragile-x-breakthrough-worldfirst-study-to-screen-100000-victorian-babies-20160708-gq1iye.html

 

 

Posted in Uncategorized | Leave a comment

The multigenerational impact of Fragile X | video

On Friday 8 July, for FX Awareness month, 7 News Queensland aired a news story focussed on the impact of Fragile X on the McRae family of Brisbane.

Rosemarie has developed FXTAS; her daughters Nyleta and Shelley are carriers of Fragile X, and they have three children with Fragile X between them.

http://yhoo.it/29FbRPD

Posted in Uncategorized | Leave a comment

The X Factor in INfertility & Neurological Health – Scientific American MIND article

The March 2016 edition of the Scientific American MIND journal included an article about Fragile X syndrome and carriers of Fragile X.about carriers of  Fragile X.

http://www.scientificamerican.com/article/the-x-factor-in-infertility-and-neurological-health/

The article discusses the fact that while Fragile X syndrome is quite rare, the Fragile X premutation “is surprisingly common – with a prevalence of around 1 in 150 women, and one in 450 men.”

It goes on to note that “In the past two decades researchers have begin to discover that the FX premutation is associated with certain health outcomes, including infertility in women and a neurodegenerative condition known as Fragile X-associated Tremor Ataxia syndrome”, first identified by Professors Randi and Paul Hagerman.

The article includes a case study of one family’s story, with several generations of that family impacted by Fragile X:  Fragile X syndrome, FXPOI and FXTAS.

The article refers to the work of Dr Randi Hagerman, Ms Louise Gane, Dr Danuta Loesch from Australia, and others researching in the field.

For the month of July, only, Scientific American Mind will provide open access to this article on their website, in support of July as a key time to increase awareness of Fragile X in Australia, the US, and around the world.

http://www.scientificamerican.com/article/the-x-factor-in-infertility-and-neurological-health/

Posted in Uncategorized | Leave a comment

Latest FX newsletter: with focus on NDIS, Research and FX Awareness month in July

fx info_June 2016
fx info_June 2016_print version_Page_01_crop
This month’s edition of FX info is a bumper edition!

NDIS: A recap of What, When, Where Fundraising for FX:  a raffle, running, riding, stair climbing – and a Half Marathon in a Suit!

Research Matters:
* Recognising the work of Prof Grant Sutherland and Prof Gillian Turner
* Royal Hospital for Women hosts Prof Ted Brown
* Fragile X newborn screening study a focus of Murdoch Childrens Research Institute celebrations
* Research study on FXTAS is seeking new participants
* Free FX Study

Genome sequencing survey by Genetic Alliance Australia Fragile X Association Board – new directors needed in October
And more….

FX clinic

FX Fundraising

 

 

 

Posted in Uncategorized | Leave a comment

Genome sequencing: what are patients & families’ perspectives?

genome

Genome sequencing is the process of reading a persons’ entire genetic material; their DNA.  It is a  new technology that has the potential to help with the diagnosis of underlying genetic disorders and influence decisions about future healthcare.  However, as with all new technologies, there are a range of considerations that need to be thought through before it becomes fully integrated into the healthcare system.

Through its Australian Patients and Families’ Perspectives on Genome Sequencing project, Genetic Alliance Australia has developed a survey to find out what patients and families think about genome sequencing and its potential impact in Australia.

The survey, together with the results of some focus groups, will become an Australian Patient Charter on Genome Sequencing that will help health policy makers work out how to integrate the technology into our health system.

If you are a parent or carer of a person with Fragile X syndrome, a person with Fragile X syndrome who is over 18 years of age or a carrier of Fragile X, please take the time to complete the survey .
You don’t need an in-depth understanding of genome sequencing to participate as there is a video and case study to read at any time throughout the survey.

The survey takes about 45-60 minutes to complete and will remain open until 5pm (AEST) on 8th July 2016

Posted in Uncategorized | Leave a comment