Raise in profile for mus­cu­lar dys­tro­phy

Auckland City Harbour News - - Health & Beauty -

The first-ever New Zealand Re­search Foun­da­tion specif­i­cally ded­i­cated to neu­ro­mus­cu­lar con­di­tions has been es­tab­lished.

It is part of far-reach­ing changes which aim to raise the profile of neu­ro­mus­cu­lar dis­eases in New Zealand.

In ad­di­tion, the Mus­cu­lar Dys­tro­phy As­so­ci­a­tion, which of­fers ser­vices to those liv­ing with neu­ro­mus­cu­lar con­di­tions, has been re­named the Neu­ro­mus­cu­lar Al­liance.

There are more than 60 dif­fer­ent types of neu­ro­mus­cu­lar con­di­tions, which af­fect the mus­cles, nerves which con­trol mus­cles and the in­ter­ac­tions be­tween the two. They strike men and women equally, are found in all eth­nic groups and can de­velop at any age.

They can cause dis­abling loss of mus­cle strength and re­sult in pro­gres­sive de­te­ri­o­ra­tion of nerves or mus­cles or both, de­pend­ing on the con­di­tion in­volved.

Move­ment and mo­bil­ity is usu­ally af­fected but speech, breath­ing and heart func­tion prob­lems can de­velop. The ef­fects can vary widely within the same con­di­tion, even in the same fam­ily.

Chair of Neu­ro­mus­cu­lar Al­liance Rodger Alexan­der says the un­pre­dictabil­ity of neu­ro­mus­cu­lar con­di­tions is one of the rea­sons for set­ting up the Neu­ro­mus­cu­lar Al­liance Re­search Foun­da­tion.

An in­de­pen­dent med­i­cal and sci­en­tific ad­vi­sory com­mit­tee, com­pris­ing health pro­fes­sion­als and sci­en­tists with spe­cific ex­pe­ri­ence in neu­ro­mus­cu­lar con­di­tions, will be ap­pointed to as­sess and rec­om­mend pri­or­ity ar­eas for re­search.

Neu­ro­mus­cu­lar Al­liance chief ex­ec­u­tive offi Graeme Longdell says the ini­tia­tive is im­por­tant be­cause it brings to mem­bers the pre­cious gift of hope and con­fi­dence for to­mor­row.

“Now is the time to bring our or­gan­i­sa­tion to­gether, to speak with one voice un­der a com­mon iden­tity and to project a more rel­e­vant im­age for the fu­ture”.

In­de­pen­dent re­search con­ducted in 2006 by the then Mus­cu­lar Dys­tro­phy As­so­ci­a­tion among its mem­bers re­in­forced the need for change. The as­so­ci­a­tion’s two largest mem­ber groups are af­fected by CMT and My­otonic Dys­tro­phy, nei­ther of which are mus­cu­lar dys­tro­phies.

For more in­for­ma­tion, con­tact the Neu­ro­mus­cu­lar Al­liance on 0800800-337 or www.mda. org.nz

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