Win One for FDR — and the Wheelchair Warrior in Your Life

July 26, 2012

Huffington Post | July 24, 2012 | By Don C. Reed

One recent night in Washington D.C., I saw two statues of Franklin Delano Roosevelt: one was huge, capturing the outsized spirit of the man, a green-bronze cape sweeping around him. The second was more accurately life-sized, showing a small wheelchair (then made of wood) so that you realized what the man had to endure, as he fought to lead America.

Both statues were accurate.

Franklin Delano Roosevelt was America’s only paralyzed president. He lost the ability to control his lower body due to polio, and stayed paralyzed till the day he died.

But he also performed heroically, accomplishing perhaps more than any able-bodied president in our history.

Through the crushing darkness of the Great Depression, FDR and the Democratic party wove America a safety net.

Social Security: different sections which attempted to protect the old, the poor, the sick and the unemployed ;

Securities Exchange Commission to regulate the uncaring greed and cruelty of Wall Street;

The Tennessee Valley Authority, which converted devastating floods to useful hydro-electricity;

These and much more were all made possible by that man in the wheelchair.

I propose we honor FDR– or another wheelchair warrior in your life.

There are roughly 3.3 million Americans in chairs, so chances are you know someone on wheels.

For me, it’s easy. I have numerous wheelchair warrior heroes. Christopher Reeve, of course, the paralyzed Superman who made it seem so natural to take on a medical condition incurable since the dawn of man.

And people you might not know, like Karen Miner and Fran Lopes, who for almost two decades have work quietly behind the scenes to raise money for research for cure.

But my personal pick is my son, Roman Reed.

The first night after his college football accident, when he was lying in bed with his athletic career suddenly ended — he asked for a banner to be made, to hang over his bed, reading: “I CAN, I WILL, I SHALL!”

That’s Roman, and he is still the same today. In the 17 years since his neck was broken, he has never wavered, never ceased believing in the possibility of cure. He looks beyond the confines of his own self, so that the struggle of a little girl named Gwendolyn Strong, paralyzed from Spinal Muscular Atrophy, is immediate and vital to him. He knows we are in this fight together, to win or lose.

Click HERE or on the image below to read more…

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FightSMA Announces Introduction in the House of Representatives of the National Pediatric Research Network Act (NPRNA)

July 21, 2012

FightSMA Announces Introduction in the House of Representatives of the National Pediatric Research Network Act (NPRNA)

Press Release | July 20, 2012

ALEXANDRIA, VA. July 20, 2012—A bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) was introduced yesterday in the U.S. House of Representatives.

The bipartisan bill, called the National Pediatric Research Network Act (NPRNA) is being introduced by Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA). It is designed in part to help achieve the goal of securing additional federal resources to accelerate clinical trials for spinal muscular atrophy (SMA).

“We are thrilled about this bill which is the result of the dedication of so many in the SMA community,” said Martha Slay, founder and immediate past president of FightSMA. “Legislation to benefit SMA is at the heart of the FightSMA mission.”

“Over the past year, FightSMA has worked with our champions in the Congress, Representatives McMorris Rodgers and Lois Capps, on this important legislation. With the support of longtime FightSMA ally House Majority Leader Eric Cantor (R-VA), these two key members of the House Energy and Commerce Committee’s Subcommittee on Health have collaborated to craft bipartisan legislation that will advance translational research and clinical trials for a variety of rare pediatric disorders, with SMA serving as a model disease,” said Ms. Slay.

“I am proud to join Rep. Capps in introducing the very important National Pediatric Research Network Act. She has been an instrumental leader in the fight to promote pediatric research for genetic disorders, especially spinal muscular atrophy and Down syndrome,” said Rep. McMorris Rodgers. “As the mother of a son with Down syndrome, I am confident this legislation will go a long way to improving the lives of those with genetic disorders. I look forward to working in a bipartisan way to make sure this bill is signed into law.”

“I am proud to co-author this legislation with my friend (Rep.) Cathy McMorris Rodgers, which would go a long way to increasing and improving research on children’s illnesses–especially rare and complex diseases–and developing new treatments to fight them,” said Congresswoman Capps. “Every parent’s worst fear is that their child becomes sick, and we owe it to all parents to do what we can to fight childhood illnesses. I would also like to thank my constituents, Bill and Victoria Strong, for their tireless work on behalf of their daughter, Gwendolyn, and all children with Spinal Muscular Atrophy and other rare diseases. Their dedication to fighting this terrible disease has been an inspiration for me and a driving force behind this bill,” said Congresswoman Capps.

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With a cure in sight, Alyssa plans annual ‘Working on Walking’ fund-raisers

July 19, 2012

With a cure in sight, Alyssa plans annual ‘Working on Walking’ fund-raisers

The Valley Breeze | July 18, 2012 | By Meghan Kavanaugh

CUMBERLAND – It has been just over a decade since 10-year-old Alyssa Silva began designing greeting cards to raise research money for spinal muscular atrophy, a genetic disorder that causes her spinal nerve cells to degenerate, leaving her wheelchair bound.

Eleven years later, the 21-year-old Bryant University senior and dean’s list regular has raised approximately $70,000.

And she said scientists may be within five years of finding a cure.

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New method enables sequencing of fetal genomes using only maternal blood sample

July 18, 2012

New method enables sequencing of fetal genomes using only maternal blood sample

Stanford School of Medicine | July 4, 2012 | By Krista Conger

Researchers at Stanford University have for the first time sequenced the genome of an unborn baby using only a blood sample from the mother.

The findings from the new approach, published July 4 in Nature, are related to research that was reported a month ago from the University of Washington. That research used a technique previously developed at Stanford to sequence a fetal genome using a blood sample from the mother, plus DNA samples from both the mother and father.

The whole genome sequencing in the new Stanford study, however, did not require DNA from the father — a significant advantage when a child’s true paternity may not be known (a situation estimated to affect as many as one in 10 births in this country) or the father may be unavailable or unwilling to provide a sample. The technique brings fetal genetic testing one step closer to routine clinical use.

“We’re interested in identifying conditions that can be treated before birth, or immediately after,” said Stephen Quake, PhD, the Lee Otterson Professor in the School of Engineering and professor of bioengineering and of applied physics. “Without such diagnoses, newborns with treatable metabolic or immune system disorders suffer until their symptoms become noticeable and the causes determined.” Quake is the senior author of the research. Former graduate student H. Christina Fan, PhD, now a senior scientist at ImmuMetrix, and current graduate student Wei Gu are co-first authors of the article.

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Gene Therapy Treatment Extends Lives of Mice With Fatal Disease

July 16, 2012

Gene Therapy Treatment Extends Lives of Mice With Fatal Disease

A team of University of Missouri researchers has found that introducing a missing gene into the central nervous system could help extend the lives of patients with Spinal Muscular Atrophy (SMA) — the leading genetic cause of infantile death in the world.

SMA is a rare genetic disease that is inherited by one in 6,000 children who often die young because there is no cure. Children who inherit SMA are missing a gene that produces a protein which directs nerves in the spine to give commands to muscles.

The MU team, led by Christian Lorson, professor in the Department of Veterinary Pathobiology and the Department of Molecular Microbiology and Immunology, introduced the missing gene into mice born with SMA through two different methods: intravenously and directly into the mice’s central nervous systems. While both methods were effective in extending the lives of the mice, Lorson found that introducing the missing gene directly into the central nervous system extended the lives of the mice longer.

“Typically, mice born with SMA only live five or six days, but by introducing the missing SMN gene into the mice’s central nervous systems, we were able to extend their lives 10-25 days longer than SMA mice who go untreated,” said Lorson, who works in the MU Bond Life Sciences Center and the College of Veterinary Medicine. “While this system is still not perfect, what our study did show is that the direct administration of the missing gene into the central nervous system provides some degree of rescue and a profound extension of survival.”

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Research suggests new cause to blame for spinal muscular atrophy

July 10, 2012

Research suggests new cause to blame for spinal muscular atrophy

Medicalxpress.com | June 21, 2012

Over 15 years ago, researchers linked a defect in a gene called survival motor neuron — or SMN — with the fatal disease spinal muscular atrophy. Because SMN had a role in assembling the intracellular machinery that processes genetic material, it was assumed that faulty processing was to blame.

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Researchers, with stem cells, advance understanding of spinal muscular atrophy

July 10, 2012

Medicalxpress.com | June 20, 2012

Cedars-Sinai’s Regenerative Medicine Institute has pioneered research on how motor-neuron cell-death occurs in patients with spinal muscular atrophy, offering an important clue in identifying potential medicines to treat this leading genetic cause of death in infants and toddlers.

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