Urge Indiana Lawmakers to add a deadly condition to Newborn Screening Tests
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Spinal Muscular Atrophy (SMA) is a disorder that affects control of the body's muscles. It is caused by a loss of motor neurons in the brain stem and spinal cord. This loss causes weakness and wasting away (atrophy) of muscles, from those that control body movement to the muscles that help us breathe. In the worst cases, this is a fatal condition, but to keep children alive, they can be put on a ventilator via a tracheostomy and receive nutrition through a feeding tube (https://ghr.nlm.nih.gov/condition/spinal-muscular-atrophy
There is a new medication called Spinraza that is literally changing the prognosis of this disorder. SPINRAZA increases the body’s ability to produce SMN protein critical to the health of motor neurons (Spinraza.com). I am a Pediatric Critical Care RN and I have cared for many SMA patients. Some have been sent home in hospice care to pass away at home. I have witnessed a child who could not even move his hands, arms and legs to moving his entire body and sitting up after this medication. It's truly a miracle drug!!
The key is to find this diagnosis as early as possible. The sooner the treatment takes place, the better the outcome in reversing the muscular atrophy and prevention as well. This is one of the reasons having this included in Newborn Screening Tests would be highly beneficial. It could be tested before symptoms of muscle weakness even began and treatment could begin right away.
Please sign this petition so it can be delivered to Indiana State Representative Douglas Gutwein in support of adding this test to all Indiana Newborn Screens. He will be writing legislation and presenting it to be voted on in the upcoming session.
For more information, the following article is attached. http://fox59.com/2017/12/18/westfield-mom-pushes-to-add-rare-condition-to-newborn-screenings-statewide/
Westfield mom pushes to add rare condition to newborn screenings statewide
POSTED 5:02 PM, DECEMBER 18, 2017, BY MATT SMITH, UPDATED AT 08:47PM, DECEMBER 18, 2017
WESTFIELD, Ind. – A Westfield mom is about to enter a new world of politics as Indiana lawmakers return to the Statehouse in January. And the only story she’s bringing with her is the one of her 2-year-old son Graham.
Graham was born with spinal muscular atrophy, a rare and oftentimes deadly condition where muscles become too weak to perform basic functions like walking, talking, eating or drinking.
Multiple times a day, Graham undergoes treatment.
“It’s gentle,” Graham’s mom Adrienne Vollmer said. “It just mobilizes secretions in his chest.”
Graham was diagnosed with SMA when he was two months old. But two months is often too late.
“We were really just told there’s no treatment, there’s no cure,” Vollmer said. “You can take him home and love him.”
SMA is not one of the 47 conditions newborn babies are tested for in Indiana.
But Vollmer and State Rep. Douglas Gutwein (R-Francesville) are working to change that. Gutwein is writing legislation for the upcoming session that would add spinal muscular atrophy to the list.
“We’re going to save babies lives,” Gutwein said. “It’s as simple as that.”
Gutwein said preliminary fiscal estimates indicate the cost estimated at $890,000 for the first year, which would include testing and equipping the lab that handles newborn screenings.
“Lawmakers are going to have a decision to make on this,” Vollmer said. “They’re going to have an ability to vote yes or vote no.”
Vollmer keeps Graham’s story updated on their Prayers for Graham Facebook page and is looking to gain grassroots support through the newly-created Indiana SMA Newborn Screening Coalition.
Graham is part of a clinical trial in Chicago with Spinraza, the first-ever drug that was FDA approved a year ago. Vollmer said the clinical trials showed the drug is most effective for babies who had yet to show any symptoms.
“We’re fighting for those families because we can change the face of the future for their children,” Vollmer said. “And if I can prevent another mom and dad from going through what my husband and I went through, not to mention for the children to be able to keep their ability to walk and move and swallow and breathe and survive, it’s worth it.”
Photo Credit by Team Elliott. Elliott Winegardner at 6 months old and an SMA-Type 1 fighter and survivor!
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