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PostedJul10

Rare Disease Plan HAVE Your SAY

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Media Release July 10th 2012

Father Plea’s with Others Affected to Voice Their Concerns

The father of two children diagnosed with an Ultra Rare & Fatal Condition, is asking others affected by Rare Disease to urgently have their opinions heard in an online survey on Irelands first National Rare Disease Plan. (http://ow.ly/bHTdz)

Tony Heffernan, along with wife Mary, know only too well the personal impact that rare disease can have on a family, having already lost their daughter Saoirse (5) to Batten Disease in 2011, now face the unenviable position of facing a similar faith for their four year old son Liam, who also suffers from the same condition.

Recently the family returned from the US, where Liam completed his 12-month check up, following brain surgery in May 2011, at the New York Weill Cornell facility, have just received the hearth-breaking news that the treatment trial will not cure their son’s condition. Although acknowledging that the pioneering medical treatment trial has proven to be a positive step in the right direction towards a cure, effectively pushing the ‘Batten Disease’ pause button briefly, allowing Liam to have an extended life.

The family, which has made a number of appearances on The Late-Late Show over the past couple of years, as well in many other media reports, now face the prospect of being reduced further in size in the near future. Liam, who is enjoying life as much as possible, receives a number of support interventions to keep him mobile and active, has now unfortunately started to show definite signs of disease progression.

Tony Heffernan, pictured with Minister James Reilly at Farmleigh last month, at the opening of the consultation process, is requesting the media of Ireland to help highlight the opportunity to participate in the online survey and have their opinions registered. (http://ow.ly/bHTdz).  Speaking from Oslo this morning, Mr Heffernan states that “this is an once in a lifetime opportunity for the huge sector of society affected by Rare Disease, which the Department of Health acknowledges will impact between 6 & 8% of the population during their lifetime.” (Potentially up to 360,000 persons).

With no money available within Government for promoting the survey, Mr Heffernan is seeking the support of the media to make those affected in every community aware of the process.

As the patient & parent representative, a voluntary role on the Ministers appointed National Steering Group to develop the plan, Mr. Heffernan is also the Chairperson of the Patient Support Empowerment Sub Group, which has developed a comprehensive submission to try and gain as much positive impact for the families and individuals directly affected and will continue to lobby hard to raise awareness.

Tony Heffernan, who founded the Bee For Battens, The Saoirse Foundation Charity in March 2010 with wife Mary, is now actively increasing the charities scope to provide positive life impacts for very ill children & those affected by Rare Disease. The organization is currently pursuing the development of Irelands first dedicated family rare disease Centre, “Liam’s Lodge” and a number of other projects. One of its upcoming fundraising events, a 5k Fun Run, takes place in Dublin Airport, in partnership with Barretstown, on August 26th. Full details at BeeForBattens.org

The Bee For Battens charity (Reg. CHY 19226) will also continue its fundraising campaign to support other children affected with Batten’s Disease, fund research, whilst also promoting the participation of other Irish children members in medical treatment trials. Its website www.BeeForBattens.org is used to increase the awareness of this cruel disease & to accept donations. -Ends-   For further info please contact support@beeforbattens.org Mai Harris or Tony Heffernan via 083 00 44444.

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