SMAHeadlines.com

Websites link to milk from another mother

February 21, 2011

Websites link to milk from another mother

Cincinnati.com | February 21, 2011 | By John Johnson

Susie Anderson supplements the diet of her 3-year-old son, Roman, with 15 ounces of donated breast milk every day.

The 31-year-old Erlanger mother believes Roman, who must be fed through a tube because of a genetic disease called spinal muscular atrophy, is healthier because of it. She plans to continue those feedings “as long as I can keep getting donated milk.”

Her main donor is a Fort Wright mother, but Anderson also has received breast milk from women in Fairfax, Taylor Mill and Elizabethtown, Ky., all of whom she met through the Internet.

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2 Comments | Nutrition, Ohio, United States | Tagged: nutrition, ohio, united states | Permalink
Posted by stronwi

Fairfield man shows off his artistic side by painting with his wheelchair in Vacaville

February 21, 2011

Fairfield man shows off his artistic side by painting with his wheelchair in Vacaville

The Reporter | February 21, 2011 | By Melissa Murphy

Doing something he’s always wanted to do, Fairfield resident Jeremy Hatzell will get to paint — with his wheelchair.Using vibrant colors and a canvas spread on the floor, Hatzell used his artistic side to bring the blank sheet to life at the Rhythm in Blue art studio in downtown Vacaville.

“I want it to look like Chuck Norris punched a rainbow,” he said. “I saw a car commercial where a car drove through paint and I thought I could do that too.”

Hatzell wasn’t expected to live past the age of 4 after doctors diagnosed him with spinal muscular atrophy at 8 months old.

At age 33, Hatzell knows there is a reason he is still here.

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1 Comment | California, Inspiration, Uncategorized, United States | Tagged: california, inspiration, united states | Permalink
Posted by stronwi

Study with Funding from FSMA Shows a Muscle Specific Intervention Improves Phenotype in a Mouse Model of SMA

February 18, 2011

Study with Funding from FSMA Shows a Muscle Specific Intervention Improves Phenotype in a Mouse Model of SMA

Press Release | February 18, 2011

Dr. Charlotte Sumner and colleagues at Johns Hopkins University publish a study in the journal Human Molecular Genetics showing improvement in survival but not motor function in a severe model of Spinal Muscular Atrophy by increasing the levels of the muscle modulator Insulin-like growth factor 1 (IGF-1).

Spinal muscular atrophy (SMA) is an inherited motor neuron disease caused by the mutation of the survival motor neuron 1 (SMN1) gene and deficiency of the SMN protein. Severe SMA mice have abnormal motor function and small, immature myofibers early in development suggesting that SMN protein deficiency results in retarded muscle growth. Insulin-like growth factor 1 (IGF-1) stimulates myoblast proliferation, induces myogenic differentiation, and generates myocyte hypertrophy in vitro and in vivo.

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Leave a Comment » | FSMA, Illinois, Press Release, Research, United States | Tagged: FSMA, illinois, press release, research, united states | Permalink
Posted by stronwi

FightSMA Marks 20th Birthday with New Home on the Web

February 18, 2011

FightSMA Marks 20th Birthday with New Home on the Web

Press Release | February 18, 2011

(Richmond, Virginia) – Parents fighting spinal muscular atrophy (SMA), the leading genetic killer of children under two, need help and information. Recognizing that need, FightSMA, an international nonprofit organization dedicated to finding a cure for SMA, is announcing the launch of its all new website, FightSMA.org.

“When we set out to redesign FightSMA.org, we looked at the enormous amount of information we have for SMA parents, and hoped to make it more accessible and easy to find,” said FightSMA co-founder and president, Martha Slay. “The new website features better categorization and a more flexible design that will help us in our fight, and a new website is a great way to celebrate our birthday!”

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1 Comment | FightSMA, Press Release, Technology, United States, Virginia | Tagged: press release, technology, united states, virginia | Permalink
Posted by stronwi

Michigan State Police sergeant raising money for spinal muscular atrophy in honor of daughter

February 17, 2011

Michigan State Police sergeant raising money for spinal muscular atrophy in honor of daughter

Jackson Citizen Patriot | February 17, 2011 | By

Michael Church and his wife, Jacqueline, knew their baby, Maria, had a developmental delay.

They just did not know how severe it was.

At 6 months, Maria was diagnosed with spinal muscular atrophy, a group of inherited diseases that cause progressive muscle degeneration and weakness, eventually leading to death, according to the National Institutes of Health.

A neurologist told the Jackson couple there was a slim chance Maria would live to be 2 years old.

“At that point, you’re just in total shock,” said Church, 41. “We just sat there and cried.”

Now, Maria is 3 years old, and Church is working to support other families who have children with the degenerative disease.

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Leave a Comment » | FSMA, Fundraiser, Michigan, United States | Tagged: FSMA, fundraiser, michigan, united states | Permalink
Posted by stronwi

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

February 17, 2011

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

Monterey County Weekly | February 17, 2011 | By Adam Joseph

Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.

“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”

Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.

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Leave a Comment » | California, Education, Health Insurance, United States | Tagged: california, education, health insurance, united states | Permalink
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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Leave a Comment » | FSMA, Fundraiser, Pennsylvania, Tribute, United States | Tagged: FSMA, fundraiser, pennsylvania, tribute, united states | Permalink
Posted by stronwi

Local girl shines at Leduc Firefighter Gala

February 17, 2011

Local girl shines at Leduc Firefighter Gala

The Leduc Rep | February 17, 2011 | By Bobby Roy

For anyone who has suffered a sprained muscle or a broken bone of some sort, the time it takes to heal and get back to the point of strength before suffering the injury takes a long period of time, but the strength will return.

For someone who has been diagnosed with Spinal Muscular Atrophy or SMA, losing strength in their muscles happens over a period of time and since there is no known cure for SMA, that strength will never return.

11-year-old Helen Na knows how this feels and has been dealing with SMA for as long as she can remember. At just three-years-old Helen was diagnosed with Spinal Atrophy Muscular Dystrophy.

Last night, Helen was the guest of honour at the Leduc Fire on the Roof Ambassador Gala and she spoke to the large crowd about her story of a young girl who has to go through the daily chores like anyone else, but has to do so while fighting the losing battle against muscular dystrophy.

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Leave a Comment » | Awareness, Canada, Fundraiser, Inspiration, MDA | Tagged: canada, fundraiser, inspiration, MDA | Permalink
Posted by stronwi

Spinal muscular atrophy: Meet a toddler who suffers

February 16, 2011

Spinal muscular atrophy: Meet a toddler who suffers

WTSB | February 16, 2011 | By Stefanie Fogel

Vodpod videos no longer available.

Tampa, Florida – Each and every morning a strict regiment is played out and it’s never easy for Shirley and Joe Cuadrado. Their grandson Christian is a small frail little boy who can’t do for himself.

Shirley Cuadrado, “I’ve become a radical grandmother on a mission to get a cure.”

Christian suffers from a disease called spinal muscular atrophy, otherwise known as SMA. It’s an extremely rare disease that affects 1 in 24,000 babies. It causes muscles to deteriorate and can lead to severe respiratory problems, among many other afflictions.

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Leave a Comment » | Awareness, Florida, United States | Tagged: awareness, florida, united states | Permalink
Posted by stronwi

Boy has group to thank for ‘souped-up’ wheelchair

February 16, 2011

Boy has group to thank for ‘souped-up’ wheelchair

The Shawnee Dispatch | February 16, 2011 | By Stephen Montemayor

It’s just after 6:30 Thursday morning and Sam Rice rides his wheelchair into a Merriam Krispy Kreme shop. With an entourage at least seven deep, the Benninghoven third grader is met with much celebrity.

He’s handed a heart-shaped doughnut on the house. He’d call it his favorite part of the morning, but his expression when chatting with a Kansas City Chiefs cheerleader suggested otherwise.

Joined by his parents, three brothers, a friend and his friend’s sister, Sam is up earlier than most of his classmates to celebrate Young Variety Kansas City’s one-year anniversary as part of its “Reverse Happy Hour.” Months earlier, the charity organization raised enough money to cover $30,000 in additions to his wheelchair that insurance wouldn’t cover.

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