Disabled, seniors worry about cuts to in-home care

January 9, 2012

Disabled, seniors worry about cuts to in-home care

Associated Press | January 7, 2012 | By Judy Lin

Born with spinal muscular atrophy, a genetic disease that prevents muscle development, Anthony Muli has never walked and his doctors never expected him to live past age 2.

Now, at 24, he’s a sports fanatic and a whiz on the computer. His room inside his grandmother’s house in the Northern California town of Loomis, east of Sacramento, is decorated with San Francisco 49ers and Sacramento Kings memorabilia.

He enjoys as much of life as he can with the help of his 72-year-old grandmother and caretaker, Jo Ellen Zerr, who does everything from cleaning his tracheotomy tube to driving him to his medical appointments.

The level of care is made possible in large part because of California’s In-Home Supportive Services program, which helps about 435,000 California seniors and people with disabilities. The program pays caretakers, many of them family members, hourly wages and benefits between $8 and $14.78 to help people get dressed, cook and bathe. For her work, Kerr, a retired clerk, receives about $2,800 a month before taxes to do a job she would do for free.

“I would take care of him regardless,” she said.

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Bark in the Park charity effort launched in aid of baby Matthew Chad

March 28, 2011

Bark in the Park charity effort launched in aid of baby Matthew Chad

Evening Gazette | March 28, 2011 | By Lindsey Mussett

FOUR-LEGGED friends are taking the lead in raising vital cash for a children’s hospice in memory of a tot who spent time there before he died.

Butterwick House Children’s Hospice, in Stockton, launched its brand-new Bark in the Park event – a sponsored walk with a difference – as part of the new Matthew’s Memory Appeal.

Pooches of all shapes and sizes will take a three-mile walk in memory of baby Matthew Chad, who was cared for at the hospice before he died at just three months old in September 2004, after being diagnosed with spinal muscular atrophy.

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A gift of independence

March 23, 2011

A gift of independence

Echo Press | March 23, 2011 | By Tara Bitzan

DeAnn Runge of Alexandria was a senior in high school when she set her sights on getting a dog. She was looking for more than just companionship – she was seeking greater independence.

Runge suffers from spinal muscular atrophy (SMA), a genetic disease that causes progressive muscle degeneration and weakness.

There are varying degrees of SMA, and Runge says she’s “in the middle” of the spectrum. She has never been able to walk and has limited upper body strength.

She was watching a Dateline television program about a girl with SMA who was aided in her daily tasks by a service dog.

“Instantly I knew having a service dog would change my life,” said Runge, a 1998 Jefferson High School graduate.

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Pride of Somerset Youth Awards: Becka Abson

March 9, 2011

Pride of Somerset Youth Awards: Becka Abson

thisisthewestcountry.co.uk | March 9, 2011 | By Alex Cameron

THE deeds of 17-year-old Becka Abson, of Taunton, epitomise the word ‘friendship’ and earned her a Sandy Padgett Award at the Pride of Somerset Youth Awards.

She received her certificate from Ken Padgett, husband of Ch Supt Sandy Padgett, who was in charge of policing in Taunton at the time she died.

Becka has been a loyal friend to a girl called Jasmine for the last ten years – and it was Jasmine’s mum Tina who nominated her.

Jasmine has Spinal Muscular Atrophy and is a full-time wheelchair user who needs continuous support.

That support often comes from Becka, who thinks nothing of washing or dressing Jasmine or helping her take her medication.

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FSMA is Proud to be Implementing a New Support Program for Newly Diagnosed SMA Families

December 17, 2010

FSMA is Proud to be Implementing a New Support Program for Newly Diagnosed SMA Families

Press Release | December 16, 2010

Everyone at Families of SMA is extremely proud to be implementing our latest program for newly diagnosed SMA families. We have had several conversations regarding better ways to support families and those that are newly diagnosed.  Thanks to Hillary & Keith Schmid, the FSMA Greater Florida Chapter and Audra & Andy Butler, we are excited to announce that Families of SMA has created a binder of information with specific resources for each state. These binders contain important information about SMA, as well as provide families with a list of available resources within their state.  The binders can also act as an organized place for families to keep important medical information concerning their child.

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