These RNC protesters are determined to be heard

August 28, 2012

Orlando Sentinel | August 28, 2012 | By Scott Maxwell

TAMPA — Karen Clay is using alcohol swabs to clean and sanitize her son’s ventilator.

Michael Clay is 31 years old — and all of 73 pounds. He lays immobile on his back in his bed, staring at the computer monitor mounted above his bed.

Spinal muscular atrophy has robbed his body of the ability to move much of anything other than his eyes and forehead. Yet he is able to speak using technology similar to that used by Stephen Hawking.

Sensor pads on his forehead detect nerve pulses, allowing him to control a computer.

“Would you mind stepping into the kitchen?” his computer voice asks me.

Karen needs to finish dressing and prepping Michael for their protest.

The family lives in South Tampa, a few miles from the Tampa Bay Times Forum, where all the glitz and glamour of the convention are on display.

The Clays’ life is anything but glitzy. Yet they are happy. They simply don’t want to be ignored.

“I tell people I’m an M-O-M,” Karen explained, “a mother on a mission.”

Karen, Michael and her other son, 29-year-old Brian, are protesting this week to remind the candidates and delegates of the needs of the disabled — and to put a real face on the impact on the potential cuts and changes to Medicaid that Mitt Romney and Paul Ryan have proposed.

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Pediatric Rare Disease Group Works To Advance Clinical Research Bill

August 25, 2012

FDA Week | August 23, 2012 | By Nanci Bompey

Bipartisan legislation aimed at expanding the National Institutes of Health’s investments in pediatric research through the creation of pediatric research consortia could work with newly enacted provisions in the FDA Safety and Innovation Act aimed at accelerating drug approvals, according to an advocacy group spearheading the effort. FightSMA, the group backing the legislation, is pushing for the House Energy and Commerce Committee to take up the bill when it returns from August recess.

The National Pediatric Research Network Act, introduced by Reps. Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA), directs NIH to establish a National Pediatric Research Network consisting of up to 20 pediatric research consortia over a five year period that would be eligible for awards, including grants, for basic, clinical, behavioral or translational research to meet unmet pediatric population needs, including rare diseases.

The legislation is aimed at improving clinical trials to quickly move promising drugs to approval, said Steven Eichenauer, a partner at Public Strategies Washington, who is working with FightSMA to pass the legislation.

Eichenauer added the bill would bolster research that could utilize the recently expanded accelerated approval pathway, a provision in FDASIA. He said the National Pediatric Research Network Act would help put drugs in the pipeline that can then be sent to FDA for approval, providing “a supply of newly minted therapies that have shown promise in clinical trials and are now before FDA.”

The bill would ensure these consortia focus on conducting or coordinating multisite clinical trials for pediatric rare diseases, and would establish a data coordinating center to distribute the findings, including to FDA. The consortia would be modeled after the National Cancer Institute centers and would ensure funds are dedicated exclusively towards basic and translational pediatric research and would enable inter-institutional networking, according to FightSMA. The group works to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the leading inherited cause of infant death, according to the group.

Martha Slay, co-founder of FightSMA, said the group decided to take a broader approach with the currently introduced legislation than it has in past efforts, which focused specifically on spinal muscular atrophy.

“I consider this a really historic moment for SMA and other pediatric rare diseases, going from obscurity to a place where something significant and material could be done to make clinical trials available to children who desperately need it,” she said.

Reps. Diana DeGette (D-CO), Gregg Harper (R-MS) and Peter King (R-NY) are cosponsors and a companion bill in the Senate was introduced by Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS), and is co-sponsored by Sens. Sheldon Whitehouse (D-RI), John Kerry (D-MA), Richard Blumenthal (D-CT) and Mark Begich (D-AK).

Eichenauer said the group is pressing for consideration of the bill by the House Energy and Commerce Committee when lawmakers return to Washington in September as several sponsors sit on the panel. He said committee staff have been involved in writing the legislation and it has been vetted by the committee. “The committee knows the bill well,” he said. Further, FightSMA said House Majority Leader Eric Cantor (R-VA) is a longtime supporter of their cause.

Eichenauer said the group hopes the House could approve the legislation on the suspension calendar and then the bill could come before the Senate. Some cosponsors of the bill also sit on the Senate health committee, which FightSMA has also been working with on the legislation. Eichenauer added the group doesn’t know if the bill will move on its own or will be attached to a bigger package. Sources have said moving any legislation before the elections could be difficult.

Eichenauer said sponsors of the measure are exploring the possibility of a score from the Congressional Budget Office, but said it would not affect FightSMA’s ability to move forward with the bill. The legislation could also face difficulty with the looming “fiscal cliff.”

“There is no question that federal funding is going to be a challenge now and in the coming fiscal year,” Eichenauer said. “One of the chief advantages (of the bill), is that it does use federal dollars in a more highly-leveraged way. It takes infrastructure that is already there and expands it to leverage those dollars smartly.”

FightSMA is working over the recess to gather support in Congress and among other groups, with the Coalition for Pediatric Research, the National Down Syndrome Society and the Parent Project Muscular Dystrophy endorsing the bill. Eichenauer said sponsors have discussed reaching out to other groups, including the National Organization for Rare Disorders.

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.

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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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Don’t be charitable about jobs bill

October 5, 2011

Don’t be charitable about jobs bill

The Charleston Gazette | October 5, 2011 | By Craig D. Eyermann

President Obama revived one of his favorite revenue-raising proposals in his recent jobs plan: limiting the itemized tax deductions that “millionaires and billionaires” (defined as individuals earning over $200,000 or couples earning more than $250,000 per year) can take for mortgage interest, state and local taxes, and charitable contributions.

By the White House’s calculations, this modest move would raise 86.9 percent of the $467 billion needed to pay for the jobs plan over the next 10 years.

While the White House’s revenue calculations are highly questionable, what aren’t questionable are the consequences of the president’s proposal.

According to Internal Revenue Service figures, individuals claimed nearly $34.9 billion in charitable deductions on their federal tax returns in 2009. Households reporting $200,000 or more in annual income claimed $19.14 billion, or 54.9 percent, of these deductions.

Prior to the new jobs initiative, the president previously had gone after the charitable deduction in his fiscal 2012 budget proposal. That proposal called for limiting the tax deduction for high-income earners by as much as 30 percent.

So let’s recognize reality and do some simple math. Here is the reality: at least some well-to-do households will reduce their charitable donations if the tax deduction is cut, because more of their money will go to government, making less available for charity. Logically, at least some fraction of the $19.14 billion now going to charity would disappear.

Now for the math: a 5 percent reduction in charitable giving by those claiming a tax deduction in 2009 would have reduced total contributions by $957 million. A 20 percent drop in giving would have reduced charitable contributions by $3.8 billion.

There are those, including some in the White House, who think government should do everything. But government’s track record is less than exemplary. The president’s attempt to go after the wealthy by going after the tax deduction for charitable contributions will have real human costs.

Consider the case of former Goldman Sachs partner Dinakar Singh, whose daughter was diagnosed in 2001 at 19 months old with Spinal Muscular Atrophy. The condition causes the nerve cells that control the body’s muscles to deteriorate, with severe cases causing death within a few years and less severe cases requiring substantial supportive care over the patient’s lifetime.

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Brighton mother takes health campaign to Prime Minister

June 24, 2011

Brighton mother takes health campaign to Prime Minister

The Argus | June 24, 2011 | By Siobhan Ryan

The mother of a little boy living with a rare illness has written to Prime Minister David Cameron to protest at proposals to close a children’s heart unit.

Susanna Nicholls says getting rid of the service would cut off a vital lifeline for her five-year-old son Daniel.

Daniel suffers from spinal muscular atrophy which has affected his muscles and left him unable to crawl, walk or even sit up unaided.

He needs a machine at night to help him breathe and has been in and out of hospital all his life.

Daniel, from Patcham, Brighton, has been treated by the specialist respiratory team at the Royal Brompton Hospital in London on many occasions and staff saved his life when one of his lungs partially collapsed.

Mrs Nicholls, 30, says that if the Royal Brompton’s heart unit closes, it will have a knock-on effect on other areas, such as the respiratory unit.

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Crunch Time for Paralysis Cure!

May 23, 2011

Crunch Time for Paralysis Cure!

Daily Kos | March 23, 2011 | By Don C. Reed

If you would like California to support research to cure paralysis, today is the day to be heard.

If you support research to cure paralysis, there are some California legislative Aides who need to hear from you!

It does not matter where you live. The importance is that they hear from you.

Write to the aide—the member’s name follows. Remember, just a sentence or two is all that is needed! If you want ideas, take a look at the latest I put together, at the bottom. If you only have time to do one, make it the top, aide for the chairman, Felipe Fuentes, and the vice-chair, Diane Harkey.

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Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

May 2, 2011

Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

Huffington Post | May 2, 2011 | By Don C. Reed

“He is right here,” said Pranav’s mother, in her lilting Indian accent; “would you like to speak to him?”

For a moment I was actually afraid; I don’t know why.

Pranav had Spinal Muscular Atrophy (SMA) a disease like a slow spinal cord injury. Like the paralysis which afflicts my son Roman Reed, SMA is not “catching”, and in any case we were on the telephone.

“Hello,” said a surprisingly deep voice, very dignified. I had a sudden thought — he sounded like a politician, a good one, somebody who would use the power of government to help people.

We talked about Disneyland and Elmo, both of which he strongly approved.

But the conversation was tiring for him, and we soon said goodbye.

He was three years old.

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Disabled San Antonio student lobbies for PE substitute

April 13, 2011

Disabled San Antonio student lobbies for PE substitute | April 12, 2011 | By Francisco Vara-Orta

A bill championed by a San Antonio high school student and a state representative to get a substitute physical education class for disabled students advanced in the House on Tuesday.

“It is completely unhelpful for children in my situation to sit there and have to experience this,” Jonathon Stach, a wheelchair-using junior in the International Baccalaureate program at Burbank High School, told the House Education Committee.

After testimony from a handful of people supporting the bill, the committee unanimously voted to send it to the House. The bill, proposed by state Rep. Joe Farias, D-San Antonio, could go into effect next school year.

Stach exemplifies the need for House Bill 692.

When he was 18 months old, Stach was diagnosed with spinal muscular atrophy, a motor neuron disease that affects voluntary muscles used for activities such as crawling, walking, head and neck control, swallowing and respiratory functions.

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No More Lifetime Limits: Real Life Effects of the Health Care Law

March 23, 2011

No More Lifetime Limits: Real Life Effects of the Health Care Law

Care2 | March 23, 2011 | By Kathy Mitchell

A million dollars is still a lot of money, until we get seriously ill.Three year old Gwendolyn, of Santa Barbara, California, was born with spinal muscular atrophy. Covered under her father’s health insurance plan, she has been getting excellent care but the astronomical bills were quickly approaching his lifetime coverage limit. After that, her father didn’t know how he would keep the treatments going or avoid bankruptcy.

Until now.

The new federal health insurance law, one year into its incremental implementation, eliminated lifetime limits for most health plans and has started to phase out annual coverage limits as well.

Click HERE or on the image below to read more…