Bristol mum raises £11,000 for charities in memory of her son

April 23, 2011

Bristol mum raises £11,000 for charities in memory of her son

Evening Post | April 23, 2011

A MUM raised £11,000 through a ball in memory of her son who died a year ago.

Mary Abrahams felt the star-themed ball would be the perfect way to mark a year since the death of 14-year-old Ryan.

And she managed to raise a total of £11,000, which was split between two charities that supported the family – the Jessie May Trust and Children’s Hospice South West.

The Bradley Stoke teenager was born with brittle bones and spinal muscular atrophy, but never let his disabilities get in the way of doing what he wanted to.

The former Evening Post Gold Star winner played wheelchair football for Aston Villa’s team and also played table-top cricket.

The ball at Ashton Court Mansion was held two days after the anniversary of Ryan’s death and his mother found organising the event helped occupy her during a difficult time.

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Apple iPad Helps Give Voice To Those Who Can’t Speak

April 5, 2011

Apple iPad Helps Give Voice To Those Who Can’t Speak

FOX 8 (Cleveland) | April 5, 2011 | By Debra Alfarone

When you think of Apple’s top-selling “it” product, the iPad, you probably think of long lines for the product at Apple stores, and maybe even the wealthy techno-yuppies that carry it around, but the iPad is also being used in a more altruistic manner to speak for those who can’t.

Speech therapists at Lincoln Community School in Bayonne, New Jersey have been using an iPad complete with Prologuo2go software (http://www.proloquo2go.com) to teach autistic children, many of whom don’t speak, to communicate.

Speech therapist Carmella Barbieri works closely with the children, “It’s great, so he can express a sentence to his teacher or to his peers and can communicate with others through devices like this.”

The device can spell out commands and requests and speak them aloud, such as “I need apple juice'” or “I need to go to the bathroom.”

Principal Dennis Degnan says the iPad has been a huge success, “It’s automatic feedback and it makes them feel good about themselves.”

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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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Tributes to ‘absolutely remarkable girl’

March 28, 2011

Tributes to ‘absolutely remarkable girl’

Bournemouth Echo | March 27, 2011 | By James Morton

TRIBUTES have been paid to an inspirational teenager “who left a mark on everyone who came across her”.

The family of Natalie Keith, who died at home in Ensbury Park last week after a short illness, described the 14-year-old an “absolutely remarkable girl”.

Despite being born with spinal muscular atrophy, which left her wheelchair-bound throughout her life, Natalie was a typically bubbly, active teenager.

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Child’s death inspires half marathon runners

March 8, 2011

Child’s death inspires half marathon runners

SouthCoastTODAY.com | March 8, 2011 | By Don Cuddy

NEW BEDFORD — It is difficult to imagine the grief that accompanies the death of a 2-year-old child. But the Simmons family of New Bedford has found solace in the knowledge that the loss of their son, Owen, to a childhood disease in 2009 has inspired dozens of men and women to get out and train for this year’s New Bedford Half Marathon.

The runners are dedicating their efforts to raise awareness of spinal muscular atrophy, a leading cause of death in infants and toddlers. One in 6,000 babies is born with SMA, a motor neuron disease that attacks voluntary muscle movement and leaves children trapped inside their own bodies.

Many of the runners are novices but have drawn inspiration from the leadership of Stephen Taylor, a resource police officer at New Bedford High School. Andrew Simmons, Owen’s father, is a New Bedford police detective and a colleague of Taylor.

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Run for Reece coming together

March 4, 2011

Run for Reece coming together

The Intelligencer | March 3, 2011 | By Jerome Lessard

Baby Reece Elliot will be remembered this summer.

On Sept. 8, 2010 — just seven weeks old and diagnosed with spinal muscular atrophy (SMA) Type 1 — Reece died in his mother’s arms.

On Sunday, July 17, Karen Walsh will be hosting the first Run for Reece at the Bayshore Waterfront Trail in Belleville, in means to raise funds for Families of SMA and the Belleville General Hospital Foundation (BGHF).

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Scrapbooking for a cause

February 26, 2011

Scrapbooking for a cause

The Evening Sun | February 26, 2011 | By Katharine Harmon

Five years ago, after her 6-month-old daughter died of spinal muscular atrophy, Brandy Baugher decided to hold a scrapbooking event in her daughter’s honor and to raise money for a good cause.

It was also a great opportunity to family and friends to come together and remember Emmy Rose who died on Dec. 27, 2006 of the No. 1 genetic killer of children under the age of 2.

“At first, I wasn’t sure if it would keep going,” Baugher said. “But it helped family and friends to talk about it, and know we were helping others.”

Money from the event, which is in its fifth year, goes to the Families of Spinal Muscular Atrophy in memory of Emmy. In five years, the event and donations in Emmy’s honor have reached $27,000, Baugher said.

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Hundreds of children and adults will come together for Jacob’s Run, Walk & Roll to Cure SMA

February 25, 2011

Hundreds of children and adults will come together for Jacob’s Run, Walk & Roll to Cure SMA

Press Release | February 25, 2011

Sunday, March 6 at 9:30am hundreds of children and adults will come together at the South Country Regional Park in Boca Raton for Jacob’s Run, Walk & Roll to Cure SMA.  Boynton Beach residents Shaina and Adi Rappoport have served as the event organizers since 2002 when their son, Jacob, passed way from SMA (Spinal Muscular Atrophy) related complications.  Jacob was nine months old.

“We had never heard of SMA, but now we have pledged our lives to fighting this horrific disease” said Shaina. “We have chosen to do this to honor our son’s memory.”

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Fundraiser focuses on disease that killed Effort baby

February 17, 2011

Fundraiser focuses on disease that killed Effort baby

Pocono Record | February 17, 2011 | By Howard Frank

The life of Violet Madison Wehrkamp was cut short at an age before children learn to walk. Now, in death, she will help others live.

Violet, from Effort, suffered from Spinal Muscular Atrophy. It’s a rare genetic disease that affects the voluntary muscles used for basic activities such as crawling, walking, head and neck control, and swallowing.

It affects approximately 1 in 6,000 babies and is the leading genetic killer of infants. It takes the life of about 13,000 children each year, many before they reach their second birthday.

Violet was born Feb. 18, 2010, and died Aug. 27, 2010. She lived for just six months and nine days.

Her uncle, Gary Wehrkamp of Stroudsburg, along with a group of businessmen called the Wishmakers, wanted to give meaning to Violet’s death by raising money for an organization that helps fund research and supports families affected by the disease.

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Tot touched many

February 5, 2011

Tot touched many

The Intelligencer | February 5, 2011 | By Jerome Lessard

Karen Walsh never imagined having to decide to keep her baby alive or help him die.

Reece Miller Elliott was only on earth for seven weeks, but he was loved and brought love every second he was here.

Reese was born at nine pounds, two ounces on July 20, 2010, the day of his sister Daisy’s third birthday. Less than three weeks later, Reece was diagnosed with spinal muscular atrophy (SMA) Type 1, a collection of different muscle diseases also know as Werdnig-Hoffman disease.

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