Murt thanked for­tourette’s sup­port

Public Spirit - - OPINION -

To the ed­i­tor:

This is to ac­knowl­edge and thank state Rep. Thomas Murt for lead­ing the ef­fort to re­store fund­ing to the Penn­syl­va­nia Tourette Syn­drome Al­liance.

As a par­ent of boy with Tourette’s syn­drome, I can tell you that th­ese chil­dren are of­ten mis­un­der­stood, tar­geted, mocked and bul­lied. This lack of aware­ness and un­der­stand­ing ex­tends from play­grounds to school rooms. A spe­cial ed­u­ca­tion teacher once made my son turn his desk fac­ing a cor­ner be­cause he was un­con­trol­lably blurt­ing out vo­cal tics in her class­room. It breaks my heart when I think about how painful and hu­mil­i­at­ing that ex­pe­ri­ence was for him.

The Tourette Syn­drome Al­liance ad­vo­cates and fights for th­ese kids, and trav­els the state meet­ing with educators and oth­ers in an ef­fort to ed­u­cate peo­ple and raise aware­ness. The al­liance would likely not sur­vive with­out state as­sis­tance.

This is why I was so dis­ap­pointed when Gov. Cor­bett pro­posed cut­ting all state sup­port to the Tourette Syn­drome Al­liance in his bud­get. I wish to pub­licly rec­og­nize and thank Rep. Murt for buck­ing the gov­er­nor on this is­sue, and em­phat­i­cally speak­ing out at a re­cent Capi­tol bud­get hear­ing in sup­port of restor­ing Tourette’s fund­ing.

Thomas Murt has be­come a cham­pion for chil­dren with Tourette’s syn­drome and has earned my ap­pre­ci­a­tion and grat­i­tude.

Mar­i­lyn Tocci New Cum­ber­land, Pa.

••• To the ed­i­tor:

On be­half of the more than 3,000 chil­dren and adults liv­ing with Tourette’s syn­drome in the Com­mon­wealth of Penn­syl­va­nia, I wish to thank and com­mend state Rep. Thomas Murt for cham­pi­oning the cause to re­store fund­ing to the Penn­syl­va­nia Tourette Syn­drome Al­liance.

The PA Tourette Syn­drome Al­liance pro­vides sup­port to those with TS by pro­vid­ing in­for­ma­tion, train­ing and dis­abil­ity ad­vo­cacy through­out the state. Th­ese ser­vices are crit­i­cally im­por­tant to those with TS and their fam­ily mem­bers but also to their schools and com­mu­ni­ties.

Tourette’s syn­drome is a mis­un­der­stood neu­ro­log­i­cal con­di­tion af­fect­ing 3-10 in 1,000 chil­dren and caus­ing a per­son to have un­con­trolled move­ments and vo­cal­iza­tions. Th­ese symp­toms oc­cur re­peat­edly, change with­out fore­warn­ing and of­ten in­crease with stress. Symp­toms can be mild, such as blink­ing and throat clear­ing, to more se­vere, such as full body twitches or sud­den scream­ing. Of­ten un­til their teach­ers and class­mates un­der­stand or are trained, many chil­dren with TS are rep­ri­manded

in school or tor­mented b y peers for symp­toms which are caused by t h e i r d i s a b i l i t y.

Through train­ing and di s a bi l i t y ad­vo­cacy, con­sul­tants from t he PA Tourette Syn­drome Al­liance help ed­uca- t ors find ways to al­low chil­dren with TS to f i nd success in t he class­room, help peers un­der­stand and em­pat hi z e with t heir c l a s s - mates and in some cases even re­duce c ost s f or un­nec­es­sary out of school place­ments. Sim­ply s a i d, the PA Tourette Syn­drome All i a nce helps f a mi­lies who have nowhere else to t urn.

It i s wit h g r e a t a p - pre­ci­a­tion that I t h a n k Rep. Murt for his t e s t i mony be­fore a re­cent bud­get hear­ing i n Harr i s b u r g . As a f o r mer e d u c a t o r, he truly un­der­stands how i mpor­tant th­ese Touret t e ’s s y n d r o me ser­vices are to the f a mil i e s af­fected, to area schools and to t h e c o mmu­nity.

Si n c e r e l y, Sher r i e Spon­sel l e r

PA Touret t e Synd r o me All i a n c e I n c .

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