SMAHeadlines.com

Siblings beat the odds, continue to fight for a cure for muscular dystrophy

February 15, 2011

Siblings beat the odds, continue to fight for a cure for muscular dystrophy

The Coast News | February 15, 2011 | By Lillian Cox

OCEANSIDE — Sarah Carlson of Oceanside has exceeded expectations all her life. When she was diagnosed with muscular dystrophy, or MD, at 18 months old her parents were told she wouldn’t live beyond five years. Today she is a popular, 22-year-old biology major at Palomar College with plans of becoming a research scientist.

Younger brother, Scott, 20, also has MD. Like Sarah, he’s both tough and smart. Scott’s a junior in the aeronautical engineering department at UCSD with plans to go on to graduate school and pursue a career with Boeing or another defense contractor.

Currently, the siblings are recruiting members for Carlson & Co., their fundraising team, which is generating sponsors for the upcoming MDA Muscle Walk San Diego in Mission Bay on Feb. 27.

Click HERE or on the image below to read more…

Leave a Comment » | California, Fundraiser, Inspiration, MDA, United States | Tagged: california, fundraiser, inspiration, MDA, united states | Permalink
Posted by stronwi

A Rockville Centre boy’s wish comes true

February 11, 2011

A Rockville Centre boy’s wish comes true

LI Herald | February 10, 2011

Rockville Centre resident Dylan Cuevas, 7, who has spinal muscular atrophy, used his Make-A-Wish to meet President Barack Obama last year, telling him about the disease and raising awareness of it. With his parents Debbie and Ron Cuevas, sister Heather and grandfather John Martin, Dylan was greeted by the president in the West Wing Hall outside the Oval Office on May 25. The family also met with Sen. Chuck Schumer and Rep. Carolyn McCarthy during their visit to Washington, D.C.

Click HERE or on the image below to read the article on the LI Herald…

2 Comments | New York, United States, Wish | Tagged: new york, united states, wish | Permalink
Posted by stronwi

Electric wheelchair appeal for 16-month-old disabled Orpington boy

February 10, 2011

Electric wheelchair appeal for 16-month-old disabled Orpington boy

News Shopper | February 10, 2011 | By Michael Purton

THE parents of a 16 month old disabled boy are appealing for donations for a powered wheelchair so he can move around independently.

Charlie Bolton from Orpington was diagnosed with spinal muscular atrophy type two at 12 months old, and the condition has left him unable to crawl, kneel, stand, walk or sit up from a lying position.

His parents Aimee Spiers and Edward Bolton want him to have an electric wheelchair, but have been told by the NHS one is not likely to be available until he is five years old.

So they have started a campaign to raise the £18,000 needed for the wheelchair, which they say will allow him to “interact and socialise with his peers and have some independence”.

Click HERE or on the image below to read more…

Leave a Comment » | Equipment, Fundraiser, Health Insurance, United Kingdom | Tagged: equipment, fundraiser, health insurance, united kingdom | Permalink
Posted by stronwi

Mum’s fight for a cure

February 10, 2011

Mum’s fight for a cure

Waverley Leader | February 10, 2011 | By Michelle Carnovale

IN JUST two short years, Julie Cini lost her two baby daughters to a deadly and incurable genetic disease.

Both were born with spinal muscular atrophy (SMA), a muscle-wasting disease that leaves a person unable even to muster the strength to cough.

Tragically, in the same period, Ms Cini also lost her partner, Ross Brownlaw, in a car accident, leaving her at 13 weeks pregnant to build the charity they had established just a year earlier to support families affected by SMA.

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Leave a Comment » | Australia, Fundraiser, Inspiration, SMAAA | Tagged: australia, fundraiser, inspiration, smaaa | Permalink
Posted by stronwi

Communication breakdown: Early defects in sensory synapses in motor neuron disease

February 9, 2011

Communication breakdown: Early defects in sensory synapses in motor neuron disease

Physorg.com | February 9, 2011

New research using a mouse model of the motor neuron disease spinal muscular atrophy (SMA) reveals an abnormality in the way that sensory information is relayed to motor neurons in the spinal cord. Importantly, this disruption in communication occurs very early in disease progression and precedes the neuronal death and muscle weakness that are the hallmark of the disease. The study, published by Cell Press in the February 10 issue of the journal Neuron, suggests that therapeutic strategies designed to improve communication at these spinal synapses might help to slow or prevent the progression of the disease and should be further explored.

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Leave a Comment » | Research | Tagged: research | Permalink
Posted by stronwi

MotorGraft Clinical Trial for SMA Placed on FDA Clinical Hold

February 8, 2011

MotorGraft Clinical Trial for SMA Placed on FDA Clinical Hold

FSMA Press Release | February 8, 2011

In December, California Stem Cell, Inc. (CSC) announced that CSC filed an investigational new drug (IND) application with the US Food and Drug Administration (FDA) for approval to commence a Phase I safety study on a jointly-developed stem cell-derived motor neuron transplantation therapy for Spinal Muscular Atrophy (SMA) Type I. Recently, CSC received an official response from the FDA. As anticipated the trial is on clinical hold. A summary of that FDA response from CSC is shown below.

California Stem Cell’s MotorGraft trial for the treatment of spinal muscular atrophy (SMA) has been placed on clinical hold by the Food and Drug Administration (FDA). A clinical hold is an order that the FDA issues to a sponsor to delay a proposed trial. Clinical holds are not uncommon, especially in cases of novel treatments such as this one. Similar holds were issued by the FDA to each of the previous applications for pluripotent stem cell therapeutics, such as those submitted by NeuralStem (ALS trial), Geron Corporation (spinal cord injury trial) and Advanced Cell Technology (macular degeneration trial), and all have since been lifted and advanced to clinical trials.

Click HERE or on the image below to read more…

1 Comment | Clinical Trial, FSMA, Press Release, Research, United States | Tagged: clinical trial, FSMA, research, united states | Permalink
Posted by stronwi

Actress hits out at battle for disabled

February 7, 2011

Actress hits out at battle for disabled

EveningTimes | February 7, 2011

River City star Eileen McCallum today spoke out about the battle faced by young people with a disability to achieve the life they deserve.

It comes as a new report found there were “shocking inequalities” in the jobs market and leisure industry.

People with a disabilities also face difficulties in using public transport – even though transport providers are legally required to make “reasonable adjustments” for disabled passengers.

The report was put together by campaign group Trailblazers Scotland, which is backed by charity the Muscular Dystrophy Campaign.
It found some 90% of people said they had been put at a disadvantage by the job application process, and half had never had a paid job.

Click HERE or on the image below to read more…

1 Comment | Advocacy, Awareness, United Kingdom | Tagged: advocacy, awareness, united kingdom | Permalink
Posted by stronwi

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.

Click HERE or on the image below to read more…

Leave a Comment » | Canada, FSMA, Fundraiser, Tribute | Tagged: canada, FSMA, fundraiser, tribute | Permalink
Posted by stronwi

Friends coping with tragedy

February 3, 2011

Friends coping with tragedy

The Andrews Journal | February 2, 2011 | By Pat Love

President Dwight Eisenhower once said, “There is no tragedy in life like the death of a child. Things can never get back to the way they were.”

Jennifer O’Dell of Andrews has joined the special sorority of those who can attest to the truth of that statement. Her youngest daughter, Kelsey, died before her first birthday from the genetic disorder spinal muscular atrophy.

O’Dell was told about the monthly meetings of Compassionate Friends, a self-help group that gives surviving parents and siblings an opportunity to come together for friendship and healing. She at first choose not to attend monthly meetings since she was not comfortable talking about her loss to a large group and was angry with everyone, including God.

Click HERE or on the image below to read more…

Leave a Comment » | Grief, North Carolina, United States | Tagged: grief, north carolina, united states | Permalink
Posted by stronwi

Cedars-Sinai Research Team Awarded $1.9 Million from State Stem Cell Agency to Develop New Tools and Technologies

February 2, 2011

Cedars-Sinai Research Team Awarded $1.9 Million from State Stem Cell Agency to Develop New Tools and Technologies

Newswise | February 2, 2011

A team of scientists from the Cedars-Sinai Regenerative Medicine Institute has been awarded a $1.9 million grant from the California Institute for Regenerative Medicine to fund development of a new technique to aid pharmaceutical discoveries for specific diseases.

Additionally, another team from the Cedars-Sinai Department of Surgery will share a $1.5 million grant with a medical technology company aiming to develop a new imaging system.

The Tools and Technology grants from the California stem cell agency support the early-stage development and evaluation of innovative tools and technologies to overcome current roadblocks in translational stem cell research.

Click HERE or on the image below to read more…