FightSMA moms fight for SMA Treatment Acceleration Act
On October 19th, the St. Petersburg Times ran an article about Trevor Smith and Laurie Elliot of the Tampa Bay chapter of FightSMA. Both Trevor and Laurie have urged Florida’s congressional representatives to support the SMA Treatment Acceleration Act.
From the article “Parents issue urgent plea to politicos”:
Thank God for the box of tissues. Trevor Smith couldn’t control her tears.
It could have been nerves. She was in Washington, D.C., without her husband or daughter for the first time.
Or maybe it was the gravity of what she had to tell C.W. Bill Young, the Bill Young, senior legislator known for getting the job done on Capitol Hill, face to face.
There was Trevor - 39-year-old wife of T.A. Smith, part-time sales rep for Kelly Services staffing agency and the mother of 6-year-old Joie - in a big, “stately looking” office.
She told Young about her daughter and about the disease that Trevor had never heard of until doctors diagnosed Joie. Spinal muscular atrophy, SMA for short, is the leading genetic killer of babies, according to the international nonprofit organization called Fight SMA.
On the Hill that day in April, dozens of regular people active in Fight SMA met with legislators or their aides. Laurie Elliott, whose 11-year-old daughter has the disease, had traveled from Hyde Park to sit across from Tampa’s own Rep. Kathy Castor.
They wanted to tell the people with political strength about an incurable disease that can lead to muscle weakness in children. They wanted to tell them that researchers think they can make a difference if they get more money for clinical trials and such.
To read the entire article, click here.
fight sma, fightsma, SMA treatment acceleration act, spinal muscular atrophy, tampa, washington dcShare This Post Via Email or Social Bookmark
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