Advocating for Autism – An Overwhelming Success, or Is It?

For almost a half century those advocating for autism have seen

• Improved diagnostic procedures

• New medications

• Many new training tools for children

• Improved types of therapy

o Applied Behavioral Analysis

o Speech therapy

• Many states now provide improved education for special needs children

• Many states now require autism to be covered by insurance

With the autism incidence going from 1 in 10,000 in the early 1960s to 1 in 88 as recently reported by the CDC and projections of increasing at a rate of more than 20% per year, one would have to describe autism as a growth industry.

A good thing for service providers, but not good for the parents or children.

Unfortunately those advocating for autism have not seen

• The cause for autism being identified

• Tools developed for prediction of autism—before symptoms develop

• Tools developed for early intervention that will eliminate the risk of autism

• Any procedures for the prevention of autism

• Any treatments, medications, or therapies that will cure autism

Advocating for the Elimination of Autism – The Path to Greater Success

• First we need to know the cause – The major cause for autism is a poor diet; also, the greatest risk factor for children with autism.

• Then prediction will be possible – Research has shown predictions based upon fifteen environmental and dietary factors are accurate more than 95% of the time.

• With accurate prediction, most risks identified can be totally eliminated

• Proper early intervention will then prevent the development of autism symptoms

• With prevention, you will eliminate the epidemic of autism over time – No new cases

Success measured in this manner would show

• Fewer children having to experience growing up with these symptoms

• Elimination of the long wait for the first appointment

• Significant reductions in special needs children in our schools

• Significant reductions in the money spent for medical services

• Fewer families would be disrupted or broken up and would not experience the financial ruin often reported

This is a personal invitation to anyone who is or wants to advocate for autism. Please put some strings on your advocacy so that any monies or support goes toward the cause, prevention, and ultimately the elimination of autism. Autism has been extensively researched since 1960 and they have not yet identified the cause! After all, it was only 1903 that man was first able to fly but only sixty-six years later man walked on the moon. When using volunteers and taxpayer monies I believe the effort should be to help the children and their families rather than growing the business of autism.

Wildly Under Funded With Gravely Ill Advocates

This morning I watched the March 13, 2008 video of Dr. Randy Pausch sitting before Congress. You may know him as the professor of computer science at Carnegie Mellon. His last lecture video that was made famous by “youtube” has had over 6 million hits since he gave it in September of 2007.

I have been following Dr. Pausch’s progress in his inspirational fight against this dreaded disease, pancreatic cancer. This cancer doesn’t care that he never smoked, drank or is an avid exerciser. This cancer doesn’t care that he is only 47, a brilliant professor and has three young children ages 6, 4, and almost 2 who will be fatherless before the end of this year.

Dr. Pausch spoke before Congress, bravely describing the need for more funding for pancreatic research. I watched as the panel attentively listened to his testimony. I was reminded of the statement, “If the Congressional Panel put down their blackberry’s and actually listened, it was a good sign.” Was Congress attentive to Dr. Pausch’s testimony because of his new found “youtube” celebrity status? We’ll never know, but I hope that they continue to give everyone testifying before them, the same proper courtesy.

Pancreatic cancer is the most deadliest form of cancer with the least NCI funding. Less then 1% of the National Cancer Institutes 4.8 billion dollars on cancer research is given to fight this disease. With 75% of pancreatic cancer patients dying from this disease in less then one year, why is it so under funded?

My thoughts on this matter bring me to some humbling opinions. Brilliant researchers are diligently working to find cures. I will use St. Jude’s Hospital as an example. The cure rate for the childhood cancer, acute lymphoblastic leukemia was 4% survival rate in 1962. Today they are looking at an 80% survival rate, on this once “universally fatal” disease. That would never have been possible without those researchers being heavily funded.

When dealing with pancreatic cancer, there is little to no incentives to research this cancer. Junior researchers with their smart, brilliant minds want to make a big difference in this world. Working on projects that are barely funded, just isn’t something most researchers want to commit to. Smart researchers want to work on heavily, funded projects. They want to make certain that their in-depth studies will continue.

Another problem is lack of advocates. As Dr. Pausch reminded us, pancreatic cancer patients don’t last long. There isn’t much time for them to get their own affairs in order, let alone advocate for funds. I’m positive his wife Jai will do all she can to continue his fight for funding, but even then her time will be limited with the demands of raising 3 young children .

Tomorrow, March 22nd will be the anniversary of my own fathers death due to this hideous disease. My time of lamenting hasn’t ended. In the four years of my fathers passing “nothing” has changed. After hearing Dr. Pausch’s speech before Congress today, I was saddened to learn “nothing” has changed in the past 30 years. Pancreatic cancer is still the least funded and most deadliest form of cancer.

Several questions come to my mind when I think of the lack of funding given to these very neglected patients. Are they medically not profitable enough? When my father was diagnosed, he was told to go home and get his things in order. My parents had discussed the option of chemotherapy with their Doctor and although it might have given him a little more time, he chose not to have this treatment. You can imagine the lack of compassion felt, when he received several phone calls from the oncologist office wanting to set up his chemotherapy sessions. The nurse became absolutely irate when my mother declined to make the appointments. I can’t help but wonder if my father had “No” health insurance, if the oncologist would have been so eager for him to be scheduled.

In closing I pray that Congress will not repeat the same injustices that had been placed on those “now deceased patients.” No matter what our government might think, nobody is immune from this disease and it could easily happen to them or one of their own. As it stands now it will continue to be a round robin, no win situation. With lack of funding, researchers are just not interested in tackling this mountain and without researchers the next 30 years look just as grim for the pancreatic cancer patient as in the past.

Decision By Regulators May Have Big Impact On Mortgage Rates And Products

A decision by government regulators on an obscure issue next month could have a big impact on mortgage rates and home loan products available to borrowers.

Under the Dodd-Frank Act that overhauls regulation of the country’s financial system, mortgage lenders must share losses on their loans. But if their mortgages are deemed safer “qualified residential mortgages” they don’t have to have their skin in the game.

Mortgage products that don’t fall into the qualified residential mortgage category will probably have higher mortgage rates and tougher qualification standards for borrowers.

Congress, which typically doesn’t get into the details of the laws it makes, didn’t define a qualified residential mortgage. Instead, it left it up to regulators, who are now grappling with the issue.

Regulators, expected to reach a decision next month, have been getting an earful from lenders, investors and housing advocates on how to define qualified residential mortgages. Most groups agree to exclude the riskiest mortgage product like negative amortization loans, but beyond that, they disagree on what to call a safe mortgage.

Regulators have a lot to think about. Take down payment amounts, for instance. A recent article by MarketWatch says large banks want a large down payment requirement of 30 or 20 percent. Small banks want a small down payment requirement of about 5 percent, and housing advocates want to allow even smaller down payments of 3 percent.

Credit scores, income to debt ratios, length of employment, and the amount of documentation are some other factors to consider.

Depending on the regulators’ ruling, many mortgage products or just a few will be defined as qualified mortgages and be exempted from risk sharing requirement. Criteria that are too strict will risk barring many borrowers from low mortgage rates, but if guidelines are too loose lenders might be free to again make risky loans.

When the real estate market bubble was building, some mortgage lenders gave risky, exotic home loans to borrowers, then bundled the mortgages into bonds that were sold to investors who took the hit when borrowers defaulted. The theory is that lenders will be more cautious about making riskier loans if they retain part of the risk, or have skin in the game.

In addition to bank regulators, the Treasury Department, the new Financial Stability Oversight Council and the new Consumer Financial Protection Bureau will be involved in creating the rule.

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