Monday, June 30, 2008

ADA Amendments Act of 2008

In a Letter to the Editor of the Orange County Register I wrote:

The ADA Amendments Act of 2008 passed the House of Representatives by a vote of 402 to 17!!!! Great stuff, but…

For those of us that live in California’s 48th Congressional District represented by Congressman John Campbell we should note that our Congressman was one of the 17!

Now I ask, “Congressman Campbell, why?”

Sunday, June 29, 2008

From the Team Mitsubishi/Nationwide Traffic MS 150 Webpage

Gaining Traction

At this moment in time we have been given great fortune. Our generation above others has been bestowed a deep understanding of the world and the power to do so much. And if we fail to make the most of this moment - if we convert hope and understanding into isolation - if pausing merely leads to complacency - then history can rightly point its finger at each of us.

Action does not have to mean “anything goes”. It need not be morally corrupt. Given a choice, most people want to be thought of a winner and in the right way. We all want to be part of a successful endeavor. We all want meaning, with the freedom to achieve success, not just to survive. We all want the best from life for ourselves, for our families, colleagues, community and society.

Achieving financial objectives and having fun while doing so is one of the fundamentals of why we participate. Beyond the traditional value fun takes on a greater sense. Fun also means enjoying the challenge of involvement, contribution, accomplishment, personal enrichment and satisfaction.

We are identified by a social and ethical balance beyond isolated entities. It’s important not only to have a clear understanding of the “Mission” and role of the NMSS, but also an intense sense of performance. There’s more to performance. A team will provide a wider view- expecting each member to give time and talent to the common cause. Truly “winning” or “success” is from contribution transitioning into a passion to perform. It is this passion that fuels the team and ignites will.

Whatever form winning or success takes on also has to serve the well being of the team. It must also include a process of continual self-improvement. Not as a creed or fixed promise but an attitude. It is about pride, with people knowing that they are pushing themselves to achieve the best that they can. Having genuine interest and excitement in the team’s actions are as important as actual achievement.

In the final analysis, the value of existence is not dependent on crisis - nor should it consist only of dramatic victories. However un-dramatic the pursuit, it must go on. The challenge- to do what we can to create a world free of MS, to be sure is real. Our concepts and definition of this challenge may be very different, but when we give it our all and to the best of our ability it shouldn’t matter what anyone thinks. What matters most is who we are and our expression of life.

For eight years Team Mitsubishi has been part of the “Movement” and we have rallied to the challenge. It started with four riders and every year since we have been in the Top 25 of teams in money raised. We have transitioned into a great group of dedicated people who also enjoy participating. For 2008 the team has been acknowledged as the “Best (Team) Promoting the Mission.” (Of the NMSS)

We dedicate this year’s ride to: Frank Austin- Champion (of MS), Starr Velez, Barbara Ferrante, Matt Bolcer and Kelly Clark and to our family members, friends and co-workers touched by MS.

Together we will end the devastating effects of MS.

Tuesday, June 24, 2008

Letter to a California State Assemblyman & my personal followup to its author

June 23, 2008

The Honorable Mervyn Dymally
California State Assembly
California State Capitol, Room 6005
Sacramento, CA 95814

Dear Assembly member Dymally:

Re: SB 1198 (Kuehl) Durable Medical Equipment - SUPPORT

A few years ago, you spoke to our organization, Cal Neuro Alliance, at our annual conference in Sacramento. I was very impressed with what you had to say and how you said it. The next day, while at the Capital building, our Advocacy team bumped into you in the hall and your graciousness was impeccable. I am a person with multiple sclerosis and my older brother also has MS.

As I am sure you are aware, SB 1198 is scheduled to be heard in the Assembly Health Committee tomorrow. I urge you to support this important bill which would require health insurers and health plans to offer coverage for durable medical equipment (DME), without a separate benefit cap, as part of their group contracts and policies. This is an important bill that will help disabled people who depend on durable medical equipment to live independent lives.

Multiple sclerosis (MS) is a chronic and often disabling disease of the central nervous system that typically is diagnosed in young adulthood. MS can lead to physical, cognitive and psychiatric symptoms, as well as functional limitations. My brother and I have all those symptoms between us. For many people living with multiple sclerosis, durable medical equipment - especially wheelchairs, scooters and walkers - is critical to their ability to live independently. My brother would be significantly impacted in his personal life if he did not have access to the correct DME. However, private health plans and insurance coverage usually puts lower caps on DME than they place on other medical services. SB 1198 will address this gap in coverage by preventing group health insurance plans from placing special coverage limitations on DME and providing a much needed lifeline for individuals with MS to function at the highest level possible at home, at work, and in the community.

I appreciate your efforts on our behalf. I urge your support of this legislation.


My email to the author of this letter follows:

First, let me say I am addressing all those addressed in your previous email. Second, I remember first hand and very precisely the graciousness afforded by Assemblyman Dymally during our chance encounter. As the recipient of his gracious deference (it was deference I didn’t expect or solicit) to a man in a wheel chair, I can only echo your praise.

I feel I know without question where Assemblyman Dymally will come down on this issue. The Assemblyman demonstrated all things good during that chance encounter! He took the extra step to help his fellow man! It really didn’t take a lot of effort, but in the busy hustle bustle environment that is the California Capitol Building he took the time to pause and assist his fellow man!

Well done! I commend you for remembering and using that event as a springboard in a letter several years later.


Monday, June 23, 2008

Potential New Treatment for Relapsing-Remitting MS

Good news for people with relapsing-remitting MS: a small clinical trial has shown that a drug used to fight cancer may reduce disease activity and disability in people with aggressive forms of the disease. According to our article about the potential new MS treatment, when the nine study patients took the cancer fighting immunosuppressant drug cyclophosphamide (Cytoxan or Neosar) intravenously for four consecutive days, they experienced long stretches of symptom-free remission. At the 23-month follow-up exam, study participants experienced on average a 39.4 percent reduction in disability, 87 percent improvement on physical and mental function tests and a decrease in the average number of brain lesions from 6.5 to 1.2.

"High-dose cyclophosphamide (sold commercially as Cytoxan or Neosar) induced a functional improvement in most of the patients we studied," wrote lead author Chitra Krishnan of the Bloomberg School of Public Health at Johns Hopkins University in Baltimore, Md. "In many of those patients, the functional improvement was sustained through the length of the study (up to 24 months) despite the absence of any immunomodulatory therapies beyond the initial high-dose cyclophosphamide treatment," she concluded.

Cyclophosphamide has been used in combatting a number of cancers, including lymphomas, multiple myeloma, leukemia, mycosis fungoides, neuroblastoma, ovarian carcinoma, retinoblastoma and breast cancer. The drug affects the function of immune cells known as T and B cells.

Multiple sclerosis is an inflammatory disease in which the protective coating covering nerve cells degenerates. Autoimmune dysfunction -- in which the body attacks itself -- is believed to be linked with MS.

"This immunoablative regimen (an immune-related therapy involving the destruction of a cell population) of cyclophosphamide for patients with aggressive MS is worthy of further study and may be an alternative to bone marrow transplantation," the study authors concluded.

Monday, June 09, 2008

FTY720 Trial Continues Despite Death, UK

Drug manufacturer Novartis has reported that two people with MS taking the oral drug fingolimod (FTY720) in clinical trials experienced problems with infections, leading to a fatality in one case. The firm said the role of the medicine in the cases was unclear and that the trial will continue.

Independent experts recommended that clinical trials with the drug should continue as planned.

Novartis said it was in talks with health authorities and experts to try and improve awareness of the risks of infections and how these may be reduced.

"Both cases involved confounding factors, including the use of very high doses of steroids in the first patient and the delayed use of antiviral therapy in the second patient," it said.

The company said FTY720's role in the cases was unclear but could not be excluded, since its mechanism of action leads to suppression of the immune system, which can increase the risk of infection.

Novartis has previously stated that it expects to submit the once-daily therapy for approval before the end of 2009 with a view to launching the drug in 2010.