Congress Passes MD-CARE Act Reauthorization
From our friend in the USA:
US Congress has passed legislation, and is sending
the bill to the president for signature. In just a few short days, the
bill was amended and passed by the House Energy and Commerce committee,
then passed by the full House of Representatives, amended and passed by
the United States Senate, and finally by the full House for a second
time. An unbelievable sequence of events that really began with the
bill’s introduction back in the first week of February.
Most importantly, this victory is for the boys and their
families. Passage of the legislation will continue to build upon the
recent progress we have made, continue to drive important research at
the Wellstone Centers, keep our issue at the forefront of attention at
NIH, CDC, HHS, and other agencies, and continue to provide hope to one
day soon find the cure and END DUCHENNE!!!!
Click here to read the press release
We congradulate the US people on working tirelessly to get this bill passed and we acknowledge that their funding of international research and best practices from this legislation will benefit our Irish boys with DMD just as much as US boys. DMD does not see international borders, it does not see politics, race, religion. It is indiscriminate, and so should Irish Funding for DMD research.
It's with disbelief that we in Ireland stand today in a paralel universe to our friends in the US . Our government has neglected DMD boys for far too long. When will Duchenne Muscular Dystrophy boys have legislation brought to pass in Ireland that will ensure therapies will continue to be researched and clinical trials continued to be supported for an eventual cure for our boys. What is Irelands Strategy for bringing an end to Duchenne?
We have, for more than just this week been in a recession in the DMD community with respect to Government action on this disease. It has been four years since our initial campaign to get the Irish government to fund DMD Research. Now is the time to face up to the hard facts that the Irish Government is responsible for finding therapies for boys with Duchenne Muscular Dystrophy, not the UK, not the USA alone but Ireland too as equals in this obligation. In a time of unprecedented number of pharmaceutical companies within Ireland and a constant urge by the government for inward investment into industry in Ireland, it is a poor representation of the Irish Government that nowhere in Ireland anyone is working on any legislation to ensure similar MD-CARE Act benefits are rightfully given to Irish boys with Duchenne.
We call on the Irish government to face up to their responsibility towards these boys and recognise that they have an obligation to fund research into rare diseases like Duchenne Muscular Dystrophy and that unanimous agreement from the Committee for Health and Children to fund DMD research (as was agreed earlier this year) should be the only requirement to have this acted upon. A Committiee is of no use unless it's recommendations are acted upon. Fund the correct DMD organisations or centers for excellence with adequate funding now into diseases like Duchenne to ensure research projects of internationally peer reviewed science are funded.
We call on the Government to act now and to see how Ireland can progress DMD research "internationally" to find therapies for our boys.
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