Tuesday, July 7, 2020

Tag: Advocacy

Tireless voice for women with disabilities wins lifetime award

Published: November 25, 2015

Keran HoweAre women with disabilities “vulnerable”? Far from it, says Keran Howe.

She doesn’t like the term, believing it makes the woman she has worked with as an advocate for more than 30 years seem passive, or submissive.

Instead, women with disabilities are targeted, says Howe, by people who use sexual abuse and family violence to control and intimidate them. And when they report their abuse they are often disbelieved.

Father fights for state support for paralysis research

Published: April 29, 2015 | Spinal Cord Injury:

Matthew Rodreick and his son, Gabe, work out in space dedicated to Gabe's physical therapy behind his Minneapolis home on Tuesday. "It's kind of a weird coincidence, but it's normal to me now," Gabe said about his injury. Both Gabe and his father have been campaigning for the last five years and believes it is "time for us to win something."

After an injury paralyzed his son, Matthew Rodreick has spent years advocating for funding to research spinal cord injuries.

Matthew Rodreick hasn’t cut or combed his hair in over six years.

After his son became paralyzed, Rodreick vowed not to maintain his hair until his son is out of his wheelchair. His long, gray dreadlocks now reach the lower part of his back.

New York Officials Restore Millions for Spinal Cord Injury Research

Published: April 7, 2014

Paul Francis New Yorkers to Cure ParalysisNew York state budget officials have restored nearly $7 million in annual funding for spinal cord injury research after an influential lobby of paraplegics put pressure on Albany lawmakers and Gov. Andrew Cuomo‘s administration.

The group, New Yorkers to Cure Paralysis, had tried unsuccessfully since 2010 to restore about $8.5 million in annual state funding for the research, which they argued is required to be spent by state law. Roughly $2 million was restored last year, and Mr. Cuomo’s original 2014 budget earmarked a total of $4.9 million.

New Yorkers to Cure Paralysis

Published: January 13, 2014

New Yorkers to Cure Paralysis is a broad coalition of doctors, medical researchers, health care advocates and patients working to reestablish the New York Spinal Cord Injury Research Program (SCIRP).

Help Bring Back Spinal Cord Injury Research Funding

Published: February 15, 2013

During the past four years, important New York State funding for the Spinal Cord Injury Research Program (SCIRP) have been diverted to offset the New York State budget deficit. The end result has been a loss of support for:

  • New cutting-edge therapies for New Yorkers with spinal cord injuries;
  • Funding for recruitment of spinal cord research scientists;
  • Training new new spinal cord injury physicians and scientists; and
  • New inventions and technology for spinal cord injury therapies and treatment.

SCIRP has been funded through a law that stipulates a surcharge on those convicted of moving traffic violations since 1998. The statute stipulates that the program be funded through a new surcharge on moving traffic violations. If you speed in New York State, a surcharge goes into a trust fund for spinal cord research. As moving violations account for many spinal cord injuries, this funding mechanism is appropriate and vital.

End sweep of spinal cord funds

Published: February 13, 2013

Wise YoungAdvocates seek to end state diversion of millions originally earmarked for research

ALBANY — Millions of dollars in speeding-ticket fees meant for spinal cord research are instead being funneled into the state’s general fund.

A group of researchers, patients and advocates gathered at the state Capitol on Wednesday to highlight the budgetary diversion.

In 1998, under Gov. George Pataki, the state passed legislation which tacked a $5 surcharge to all moving violations to finance the Spinal Cord Injury Research Fund. This fee raises about $150 million annually, and up to $8.5 million of that was intended to assist researchers.

Paralyzed Rutgers player Eric LeGrand looks to inspire, uplift with new book

Published: September 24, 2012

Nobody can say Eric LeGrand never asked, “Why me?” He did. Many times.

The former Rutgers football player, who was paralyzed after a tackle during an October 2010 game, asked himself why he had a line of people waiting to visit him while so many other patients had no one. Why he was still alive when the young girl who had been in the hospital room next to him was not. Why he was lucky enough to have multiple insurance policies and a foundation to cover the expensive rehabilitation and a customized van he’d need, while other families go bankrupt, their injured son or daughter unable to get the resources they need to recover after a tragic accident.

Then he asked himself what he could do to help others.

One-on-One with Roman Reed, spinal cord injury patient advocate

Published: August 17, 2012

The community of patient advocates is full of the most passionate, goal-oriented people you’ll ever meet, and Roman Reed is near the top of the list.

Reed, paralyzed in 1994 from a tackle during a Chabot College football game, has been one of the most visible advocates for stem cell research funding through the San Francisco-based California Institute for Regenerative Medicine, or CIRM. He also was a poster child for a state law passed a law in 2000 to fund spinal injury paralysis research through the state’s general fund.

But in the course of California’s budget meltdown, desperate state officials took away the spinal cord research funds.

Decades after ADA became law, disabled people are still fighting for full inclusion

Published: July 24, 2011

During one especially cold morning in January of last year, a disabled man who uses a wheelchair and ventilator , and his wife were heading for their office in the 100 block of South 11th Street in downtown St. Louis. They were accosted that morning by a woman, standing outside the building, smoking a cigarette.

She wanted to know why in the world a man in a wheelchair would be out in this weather. She wasn’t placated by the obvious response from the man’s companion that he, like many other St.Louisans, was simply on his way to work. It apparently didn’t occur to the woman that some severely disabled people work every day.

Parking spots for disabled abused, misused

Published: April 1, 2011

DAYTONA BEACH – When Charles “Jay” Ayres joined the Army, he had no idea that years later, his biggest fight would be for parking spaces to get in and out of his van.

Mr. Ayres is not the only driver with disabilities who deals with the lack of ‘handicapped parking’ spots. Recognizing this, the Volusia County Sheriff’s Office recently added 32 volunteers to help protect accessible parking spots for Mr. Ayres and other drivers with disabilities.