Friday, May 23, 2008

What's this really all about?

My previous post involved an email I sent to the President on June 6, 2007 and the susequent response on May 15, 2008. Though I knew that the National Multiple Sclerosis Society had conducted a Public Policy Conference in Washington earlier in the month and that there had been a hearing regarding Stem Cell Research I simply failed to put it all together. The timeline and subject matter of all these events screams, "Not a coincedence!" Here's a brief synopsis from the MAY 20 MSACTIVIST blog post:

Society Chairman Testifies Before Congress in Support of Stem Cell Research

On May 8, Weyman Johnson, the National MS Society Chairman of the National Board of Directors, provided testimony to Congress in support of embryonic stem cell research.

Restating the timeline:

June 7, 2007 an email is sent to supporting the newly passed Stem Cell Therapy Enhancement Act of 2007.

Shortly thereafter, on June 19, 2007, President Bush vetoed the legislation. No attempt was made to overturn that vetoe, and there was no response to the June 7 email.

Eleven months later, on May 8, 2008 the Chairman of the Board of the National MS Society testifies supporting Embryonic Stem Cell research.

One week later, on May 15, 2008 a letter is drafted in response to the June 7, 2007 email! I have to ask,"Why anyone, especially the White House, should bother to reply to an email after that long?" And, "How deep into the White House email archives did they have to dig to stumble into my original email?" My belief is that someone checked the archives for emails involving both, "Stem Cell research" and, "Multiple Sclerosis" and out came a boilerplate letter! Hmmm, I wonder if anyone else got the same letter?

Well, MS Awareness IS happening! AND Big(gest) Brother must be watching!

Tuesday, May 20, 2008

A Timely Response 11 1/2 months in the making!

On June 7 2007 I sent the President the following email:

Mr. President,

I just noted that the Stem Cell Therapy Enhancement Act of 2007 has passed both Houses of Congress and is bound for your desk. Mr. President please do not veto hope! Hope for the millions who either today or in the future will confront chronic and often times life-threatening diseases.

In the past you have identified yourself as a compassionate conservative. Don’t overlook compassion for those of us that walk this earth today. And please remember this is a right-to-life issue for many of us suffering from numerous chronic progressive and debilitating diseases. The embryo in question will never be implanted in a mother’s womb, it will never be adopted, it has NO FUTURE! By the stroke of your veto pen you render those embryo totally useless. However, by signing this legislation that embryo may provide science with one small step toward solving the mysteries of some of medicine’s most elusive disease treatments.

Mr. President, I live with one of those diseases. And though the genetic connection has never been proven I have to seriously consider how I, my half-sister and our aunt all contracted Multiple Sclerosis. I look at my grand-children and wonder, are they destined to confront this disease as well?

Mr. President, hope rests in your hands!


Frank Austin

Then yesterday, May 19, 2008, I received a written response, the letter read:


May 15, 2008

Mr. Frank Austin
Tustin, California 92780-6941

Dear Mr. Austin:

Thank you for writing to President Bush about the complex issue of human embryonic stem cell research. We appreciate hearing your views.

In making a decision on the use of Federal funds for human embryonic stem cell research, the President received advice from scientists, scholars, bioethicists, religious leaders, doctors, researchers, members of the Congress and the Cabinet, and the American people. He spent a great deal of time studying and reflecting on this issue. The result is a balanced policy shaped by deeply held beliefs regarding both the sanctity of human life and the potential of science and medicine to help humanity.

The President’s policy has allowed important research to go forward without using Federal funds to encourage the further deliberate destruction of human embryos. There is no ban on human embryonic stem cell research, and the policy places no limits on the research itself. In fact, this Administration became the first to make Federal funds available for this research -- yet only on stem cell lines derived from embryos that had already been destroyed at the time the President announced his approach to embryonic stem cell research.

The Administration’s investment in stem cell research has expanded studies using alternative types of human stem cells -- drawn from adults, children, umbilical-cord blood, and other non-embryonic sources which can he drawn with no harm tothe donor. This research using non-embryonic stem cells has already Jed to treatments for thousands of patients and continues to show great promise.

In addition, researchers are developing new techniques to produce stem cells similar in nature to those derived from human embryos, but without harming or destroying embryos. As the President has said, our challenge is to harness the power of science to ease human suffering without sanctioning the practices that violate the dignity of human life. President Bush believes that America’s scientists have the ingenuity and skill to meet this challenge.

For more information on President Bush’s policy on stem cell research, you may wish to visit the White House website at Thank you again for writing. President Bush sends his best wishes.


Nancy Theis
Special Assistant to the President and
Director of Presidential Correspondence

Friday, May 09, 2008

Could this be a truly big deal?

Several years ago I attended a MS research symposium where bone marrow transplants for a group of MS patients was mentioned. I was genuinely interested in this research because it just made sense to me. Then this past Wednesday I happened to be scanning through the Multiple Sclerosis RSS feeds I subscribe to and one of the news items was:

Bone marrow treatments restore nerves, expert says
By Maggie Fox Wednesday, May. 7, 2008; 2:26 AM

BETHESDA, Md. (Reuters) - An experiment that went wrong may provide a new way to treat multiple sclerosis, a Canadian researcher said on Tuesday. Patients who got bone marrow stem-cell transplants -- similar to those given to leukemia patients -- have enjoyed a mysterious remission of their disease.

Dr. Mark Freedman of the University of Ottawa is not sure why. "Not a single patient, and it's almost seven years, has ever had a relapse," Freedman said

If you are interested the whole article can be found at:

So, what's your take on this?

Tuesday, May 06, 2008

A Multiple Sclerosis Activist's Email re: Sharps Disposal

Addressed to Orange County Integrated Waste Management Disposal

To whom this may concern:

On September 1 of this year, it will become illegal to dispose of sharps in the garbage. To my knowledge, OC does not have an integrated policy for sharps disposal for private users (diabetics and others who must use needles for their prescription medications). Other counties in the state have programs in existence already. What does OC do for this need? Is there a program in existence or is there one being developed?

Most hospitals, doctors, etc. will not accept these used needles. What should a person like myself do? I do a self-injection every day for management of my Multiple Sclerosis and want to dispose of my needles in the correct manner. I know there are countless others who face the same issue on a daily basis, people who cannot make a special trip to a drop point because of disability.

Please let me know what your plans are for OC. If I can help in any way, offer any guidance from the community of users, please let me know.


Thursday, May 01, 2008

Email Response from Senator Barbara Boxer

Responding to your message‏
Sent: Thu 5/01/08 11:53 AM

Dear Mr. Austin:

Thank you for contacting my office to express your views. I believe that all citizens should become involved in the legislative process by letting their voices be heard, and I appreciate the time and effort that you took to share your thoughts with me. One of the most important aspects of my job is keeping informed about the views of my constituents, and I welcome your comments so that I may continue to represent California to the best of my ability. Should I have the opportunity to consider legislation on this or similar issues, I will keep your views in mind.

For additional information about my activities in the U.S. Senate, please visit my website, From this site, you can access statements and press releases that I have issued about current events and pending legislation, request copies of legislation and government reports, and receive detailed information about the many services that I am privileged to provide for my constituents. You may also wish to visit to track current and past legislation.

Again, thank you for taking the time to share your thoughts with me. I appreciate hearing from you.

Barbara Boxer
United States Senator