April 18, 2011
Hit-and-run victim seeks help; police work to find suspect
lohud.com | April 17, 2011 | By James O’Rourke
HILLCREST — Born with spinal muscular atrophy, Cynthia Gershanow had already become accustomed to life in a wheelchair. But since a hit-and-run driver stripped her of even her limited mobility, she has been forced to cope with a new lifestyle — one confined to a bed.
Nearly six months later, she’s still recovering from her injuries and hoping that police will be able to solve the case and make an arrest.
Gershanow was returning from the grocery store Oct. 28 when she attempted to enter the Eckerson Village apartment complex, her home since 1991, about 7:30 p.m.
It took only a moment. A car police believe may have been speeding hit her, catapulting both Gershanow and her motorized wheelchair across East Eckerson Road. The driver kept on without even stopping to see what had happened.
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Posted by stronwi
March 24, 2011
‘American Idol’ Star Robbie Rosen Sings at Legislature
MineolaPatch | March 24, 2011 | By Geoffrey Walter
By now, 17-year-old Robbie Rosen is used to performing in front of crowds.
The junior from Calhoun High School finished this years’ “American Idol” competition in the Top 24 after his renditions of Paul McCartney’s “Yesterday,” “Moody’s Mood for Love,” “I Want You Back” and “Got to Get You Into My Life” in the group performances, and Elton John’s “Sorry Seems to Be the Hardest Thing” to move him through the various rounds of the FOX show’s competition.
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March 16, 2011
Enzo Biochem Unit Launches First-to-Market Survival Motor Neuron (SMN) Protein Immunoassay System
Press Release | March 16, 2011
Enzo Biochem, Inc. and the Spinal Muscular Atrophy (SMA) Foundation today announced that Enzo’s wholly owned subsidiary, Enzo Life Sciences Inc., has launched a unique immunoassay (ELISA) system which can be used for the identification and detection of Survival Motor Neuron (SMN) protein. The kit is the result of a collaborative agreement between Enzo and the SMA Foundation.for the development of reagents and assays for SMN protein. The availability of an effective SMN ELISA could further enable and expedite drug discovery, development and therapy for Spinal Muscular Atrophy, the leading genetic cause of mortality in infants and toddlers.
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March 10, 2011
Disabled kids, educators rally at the Capitol
Times Union | March 10, 2011 | By Casey Seller
An estimated crowd of 600 disabled students, family members and educators joined legislators this morning in the well of the LOB to call on Gov. Andrew Cuomo to pull back on an element of his budget proposal that would change the way “4201″ schools are funded. New York has 11 state-supported private schools that work with 1,500 student who are blind, deaf, or fall within an additional range of disabilities.
Under the current system, 10 percent of the cost of each pupil is covered by the local school district, while 90 percent is picked up by a discrete state appropriation distributed by the Education Department. Cuomo’s budget proposal would require the local district to pick up the tab, as is the case with other special education schools. The state would then reimburse 85 percent of the remaining cost, throwing the remainder back on the district. The end result would be a 13.5 percent reduction in state spending on the schools on average, although the cut sustained by each school would be up to the individual district.
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February 11, 2011
A Rockville Centre boy’s wish comes true
LI Herald | February 10, 2011
Rockville Centre resident Dylan Cuevas, 7, who has spinal muscular atrophy, used his Make-A-Wish to meet President Barack Obama last year, telling him about the disease and raising awareness of it. With his parents Debbie and Ron Cuevas, sister Heather and grandfather John Martin, Dylan was greeted by the president in the West Wing Hall outside the Oval Office on May 25. The family also met with Sen. Chuck Schumer and Rep. Carolyn McCarthy during their visit to Washington, D.C.
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January 19, 2011
SMA Foundation and Rules-Based Medicine Collaborate on Biomarker Panels to Guide SMA Therapeutic Development
Press Release | January 19, 2011
NEW YORK and AUSTIN, Texas, Jan. 19, 2011 /PRNewswire/ — The Spinal Muscular Atrophy (SMA) Foundation and Rules-Based Medicine, Inc. (RBM) announced today that they have reached the first milestone in a program to develop a panel of plasma protein biomarkers for SMA using RBM’s Multi-Analyte Profiling (MAP) technology platform. In this collaboration, RBM will discover and also confirm plasma protein biomarker candidates previously identified from the multicenter Biomarkers for SMA (BforSMA) clinical study sponsored by the SMA Foundation and conducted by BG Medicine. The identification of such biomarkers may help to assess drug efficacy and shorten the duration of clinical trials of SMA therapies.
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January 8, 2011
Online system allows boy to attend class
thedailystar.com | January 8, 2011
In discussing the special arrangements for teaching Grand Gorge kindergartner Dylan Utter, Mary Lucas, Roxbury Central School Committee on Special Education chairwoman, said that this is the first time the school has dealt with such a situation. Utter is unable to attend class because of the effects of spinal muscular atrophy.
She didn’t know of a similar situation in the Otego-Northern Catskills Board of Cooperative Educational Services district.
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December 19, 2010
iPad is Truly Magic, Revolutionary for Disabled Boy
tom’s Guide | December 19, 2010 | By Marcus Yam
Touch screen devices existed long before Apple decided to utilize the technology for its iPhones, iPods and iPads, but its iOS devices have hit the mainstream in a capacity to reach everybody – and we mean every body.
Those with disabilities that keep them away from computing through traditional inputs, such as the dexterity-requiring keyboard and mouse, often find much to like about touch screens. Touch screens make it simple, as the user simply must touch or flick to navigate.
7-year-old Owen Cain from Brooklyn, NY has suffered from spinal muscular atrophy Type 1, a debilitating motor-neuron disease, since infancy. Doctors say that he would be paralyzed for life and that he would die at about two years of age.
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December 15, 2010
Roxbury kindergartner learning ABCs at home via computer connection
thedailystar.com | December 15, 2010 | By Mark Boshnack
ROXBURY — Video technology is providing a Grand Gorge boy with a long-term illness with an opportunity for a richer education, several involved with the effort said.
Five-year-old Dylan Utter is unable to attend kindergarten at Roxbury Central School because of the effects of a disease, spinal muscular atrophy, his mother Erica Utter said. He was diagnosed with it when he was 15 months old.
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October 29, 2010
iPad Opens World to a Disabled Boy
New York Times | October 29, 2010 | By Emily B. Hager
OWEN CAIN depends on a respirator and struggles to make even the slightest movements — he has had a debilitating motor-neuron disease since infancy.
Owen, 7, does not have the strength to maneuver a computer mouse, but when a nurse propped her boyfriend’s iPad within reach in June, he did something his mother had never seen before.
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SMAHeadlines.com 