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Malvern Blooms 2011 Will Benefit Sweet Baby Zane, Families of Spinal Muscular Atrophy

March 24, 2011

Malvern Blooms 2011 Will Benefit Sweet Baby Zane, Families of Spinal Muscular Atrophy

MalvernPatch | March 24, 2011 | By Pete Kennedy

A portion of proceeds from this year’s Malvern Blooms Festival will be donated to Families of Spinal Muscular Atrophy, who will use the money to purchase car seats for children with the disease.

The donation will be facilitated by Sweet Baby Zane, a Malvern-based group founded in memory of Zane Schmid, who succumbed to type I SMA at just five months old. Her twin sister, Avery, does not carry the SMA gene.

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Posted by stronwi

Munro keeps ‘Cats ahead in numbers game

March 10, 2011

Munro keeps ‘Cats ahead in numbers game

The Herald-Mail | March 4, 2011 | By Tim Koelble

WILLIAMSPORT — Austin Munro is an important part of the Williamsport boys basketball team.

He just doesn’t wear a uniform.

The 18-year-old senior was diagnosed with spinal muscular atrophy, a neuromuscular disease, at birth. He has been in a wheelchair since he was 2, but that has only kept him from being physically active in sports.

“I really haven’t thought of the disease as a big deal,” Munro said. “It’s never held me back.”

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Posted by stronwi

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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Posted by stronwi

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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Posted by stronwi

They’ll make memories, too

December 8, 2010

They’ll make memories, too

The Daily Item | December 8, 2010 | By Evamarie Socha

Toys will not be a problem at the 2010 Wish Kids holiday party in Milton this weekend.

“There are tons of games and so, so much stuff,” party coordinator Kerry Tilford said, “my house looks like Santa’s toy factory.”

The toys take over her Turbotville home until Saturday, when they’ll go to the Make A Wish kids who, with their families, will gather at 1 p.m. at St. Andrew’s Church to have fun and reminisce about their granted wishes.

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