Alumna Fights SMA One Step at a Time

July 7, 2011

Alumna Fights SMA One Step at a Time

Manhattan College | Spring 2011 Magazine

MANY PEOPLE RUN to stay in shape and achieve a personal best time, but Lauren Lundy O’Connor ’02 is running for a cause. Since 2008, O’Connor and her SMA (spinal muscular atrophy) Asics have been hitting the pavement to raise funds to support the research of SMA and to find a cure.

SMA is the No. 1 genetic killer of infants and young children and results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. When O’Connor’s nephew Owen was diagnosed with SMA in 2008 at just two months and passed away three months later, she was motivated to start running for a cause, and founded, a website that features information about SMA, Owen’s story, details on upcoming races, donation opportunities and more.

In October 2008, O’Connor ran the Dublin marathon and raised $6,000 for SMA, and all of the proceeds were donated to Columbia University’s Spinal Muscular Atrophy Clinical Research Center. Two years later, Michael Van De Loo ’94 connected with O’Connor through her website after he found out his daughter Ciara had SMA.

Click HERE or on the image below to read more on page 53 of the Manhattan College spring 2011 magazine…

Rockville Centre’s woman of distinction

June 1, 2011

Rockville Centre’s woman of distinction | June 2, 2011

Rockville Centre resident Debbie Cuevas was recently honored as one of the state Senate’s 2011 women of distinction. She joined other notable women at a reception on May 24 in the State Capitol building. Created in 1998, the Women of Distinction program honors outstanding women from across New York state who exemplify personal excellence, or whose professional achievements or acts of courage, selfless integrity or perseverance serve as an example to all New Yorkers.

“I am proud to honor Rockville Centre’s Debbie Cuevas as my 2011 Woman of Distinction,” said Senator Majority Leader Dean Skelos in a written statement. “Ms. Cuevas is mother, friend, nurse, caregiver, physical therapist, [spinal muscular atrophy] activist, and much more rolled into one. A true pioneer, Ms. Cuevas founded the Greater New York Chapter of Families of SMA in 2006, as a way to give back to her community. As [its] president [she] is instrumental in serving over 500 families who have been affected by Spinal Muscular Atrophy and continues to make a positive difference in the lives of others every day.”

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A Dog, a Wheelchair and a Story of Dedication and Redemption

April 19, 2011

A Dog, a Wheelchair and a Story of Dedication and Redemption

ScarsdalePatch | April 18, 2011 | By Marisa Iallonardo

A black lab named Lex not only came to John Clark’s rescue physically, but also helped him triumph creatively.

“On either side of the driveway out there, we’ve got shag bark hickory trees. If you’re a baseball player or you know baseball players, hickory is a hard wood, and that’s what they make baseball bats out of. Well, those nuts are very hard. There was a nut lodged between two of the flagstones in the walkway, and I didn’t see it,” said Clark, a Scarsdale resident who was diagnosed with progressive spinal muscular atrophy, type 3, and is in a wheelchair.

“So I ran over it, and it should have split,” Clark said. “It should have smashed and there should have been no more to say about it. But it didn’t, and it sent me into an uncontrolled spin where I would up wedged against the stucco wall, hanging out of the wheelchair with three right wheels off the ground. I’m hanging there over the precipice of this driveway, and [Lex] went into action without being told.”

The dog moved from the right to left sides of the chair, pushing it until it was straight, according to Clark.

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Hit-and-run victim seeks help; police work to find suspect

April 18, 2011

Hit-and-run victim seeks help; police work to find suspect | 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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‘American Idol’ Star Robbie Rosen Sings at Legislature

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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Enzo Biochem Unit Launches First-to-Market Survival Motor Neuron (SMN) Protein Immunoassay System

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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Disabled kids, educators rally at the Capitol

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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