Laquinimod Demonstrated Significant And Sustained Impact On Multiple Sclerosis Disease Activity

New data from the extension phase of oral laquinimod in relapsing-remitting multiple sclerosis (RRMS) demonstrated a significant reduction in the mean number of gadolinium-enhancing (GdE) lesions in both patients who switched from placebo to laquinimod and patients who continued with their initial laquinimod dose. In RRMS patients who switched from placebo to laquinimod, 52 percent reduction in the mean number of GdE lesions was observed (p<0.0007). The reduction was significant for both patients switching to high-dose (p<0.009) and low-dose laquinimod (p<0.03). In addition, the proportion of patients who switched to active treatment from placebo, and remained enhancing lesion-free, increased from 31 percent to 47 percent (p<0.012), further reinforcing the efficacy of laquinimod on magnetic resonance imaging (MRI) measured disease activity.

Neural Cells Derived From Human Embryonic Stem Cells Reduce Multiple Sclerosis (MS) Symptoms

September 08, 2008 08:56 AM Eastern Daylight Time
Hadassah Hospital Study Shows That Neural Cells Derived From Human Embryonic Stem Cells Reduce Multiple Sclerosis (MS) Symptoms
The Study Data Is Published in the Scientific Journal of PLoS

2008 World Stem Cell Summit
EIN KEREM, Israel--(BUSINESS WIRE)--Hadassah University Hospital and Hadasit, the technology transfer company of Hadassah Medical Organization, announced today that scientists at Hadassah University Hospital have discovered a new application for human embryonic stem cells. They have demonstrated for the first time that transplanted neural cells derived from human embryonic stem cells can reduce the clinical symptoms in animals with a form of multiple sclerosis.

The findings of the study are published in an article titled “Neuroprotective Effect of Transplanted Human Embryonic Stem Cell-Derived Neural Precursors in an Animal Model of Multiple Sclerosis” in the Scientific Journal of PLoS One, a new, high-impact, peer-reviewed, open-access, online publication. Click here to access the article: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0003145.

The data presented in the report are the result of a long-term collaboration between Professor Tamir Ben Hur, director of the Neurological Department at Hadassah Hospital and Professor Benjamin Reubinoff, director of the Human Embryonic Stem Cell Research Center at Hadassah Hospital. Ms. Michal Aharonowiz and Dr. Ofira Einstein both from Hadassah, as well as Professor Hans Lassmann from the University of Vienna also contributed.

“Human embryonic stem cell-derived neural precursors were transplanted into the brains of mice with an experimental form of MS. The grafted human cells integrated in the mice brains and migrated towards the sites of inflammation. They suppressed the inflammatory process in the brain, and consequently protected the animals from demyelination and nerve cell extension (axonal) injury, which are the pathological hallmarks of MS,” said Professor Benjamin Reubinoff.

Multiple sclerosis, the most common cause of neurological disabilities in young adults, is caused by an inflammatory reaction of the patient’s own immune system against the myelin sheath that envelops the nerve processes. The destruction of myelin leads to the degeneration and loss of nerve cells and permanent neurological disabilities. MS affects 2.5 million people worldwide.

“We believe that the encouraging therapeutic effects in the rodent model of MS justify moving ahead to clinical studies. We also anticipate that the anti-inflammatory effect demonstrated in the pre-clinical study may be combined in the future with the use of other human embryonic stem cell derived neural cells to repair the myelin in the brain,” said Professor Reubinoff.

FDA recommendations for cardiac monitoring of patients with multiple sclerosis (MS) who are treated with Novantrone

Additional Cardiac Monitoring for Patients on Mitoxantrone - from Heartwire — a professional news service of WebMD

Sue Hughes

July 30, 2008 — The FDA has issued an alert informing healthcare professionals about additional recommendations for cardiac monitoring of patients with multiple sclerosis (MS) who are treated with mitoxantrone (marketed as Novantrone and as generics) [1].

In 2005, the labeling for mitoxantrone was changed to recommend that left ventricular ejection fraction (LVEF) be evaluated before initiating treatment and before administering each dose of mitoxantrone to patients with MS. These changes were established in response to postmarketing and case reports in the medical literature that described decreases in LVEF or frank congestive heart failure in patients with MS who had received cumulative doses of mitoxantrone that were lower than 100 mg/m2.


Since that time, the FDA has received information from a postmarketing safety study that demonstrated poor adherence to these recommendations in clinical practice. This study used insurance-claims data and medical-record reviews to examine cardiac monitoring patterns in clinical practice. In this study, it was noted that four patients developed congestive heart failure 4 to 17 months after completing therapy with mitoxantrone.

Given the potential severity of cardiotoxicity and evidence suggesting poor adherence to the recommendations for monitoring cardiac function, the FDA is currently working with the manufacturers of mitoxantrone to remind healthcare professionals of the importance of adhering to the recommendations for patients with MS who are treated with mitoxantrone.

In addition, the FDA and the manufacturers are now advising that all patients with MS who have finished treatment with mitoxantrone receive yearly quantitative LVEF evaluations to detect late-occurring cardiac toxicity.

The FDA has issued the following recommendations for patients treated with mitoxantrone.

For All Patients

Assess signs and symptoms of cardiac disease with a history, physical examination, and ECG before initiating therapy with mitoxantrone.
Perform a baseline quantitative evaluation of LVEF.

For Patients With MS

Patients with a baseline LVEF below the lower limit of normal should not be treated with mitoxantrone.

Patients should be assessed for cardiac signs and symptoms with a history, physical examination, and ECG before each dose.
Patients should undergo a quantitative reevaluation of LVEF before each dose, using the same methodology for each assessment. Additional doses of mitoxantrone should not be administered to patients who have experienced either a drop in LVEF to below the lower limit of normal or a clinically significant reduction in LVEF during mitoxantrone therapy.
Patients should not receive a cumulative mitoxantrone dose greater than 140 mg/m2.
Patients should undergo yearly quantitative LVEF evaluations after stopping mitoxantrone to monitor for late-occurring cardiotoxicity, using the same methodology that was used for assessments that were done during treatment.

For Patients With cancer

The possible danger of cardiac effects in patients previously treated with daunorubicin or doxorubicin should be considered when weighing the benefits and risks of mitoxantrone.
The presence or history of cardiovascular disease, previous or concomitant radiotherapy to the mediastinal/pericardial area, previous therapy with other anthracyclines or anthracenediones, or the concomitant use of other cardiotoxic drugs might increase the risk of cardiac toxicity. LVEF should be monitored regularly after the initiation of therapy in patients with these risk factors.

Marijuana impairs thinking in MS patients

By Michelle Rizzo Thursday, Jul. 31, 2008; 6:26 PM
NEW YORK (Reuters Health) -

Patients with multiple sclerosis who smoke marijuana show impaired thinking compared with patients who do not smoke marijuana, according to findings in the journal Neurology.

Frank's editorial comment: Hmmm, how much did that study cost?

Adult Stem Cells Reprogrammed To Become Myelin-Making Cells

From Medical News Today

Research published in Nature Neuroscience , electronic publication ahead of print) has shown that adult stem cells in mice that are developing into nerve cells can be redirected to turn into myelin -making cells by changing a single gene . This type of research may some day help repair the damage to myelin which occurs in multiple sclerosis (MS).

In people with MS the immune system can attack both myelin and myelin making cells (oligodendrocytes). Limiting the number of myelin making cells impairs the capacity to repair the damage to myelin. One potential treatment option currently being investigated involves encouraging immature stem cells that reside in the adult brain, called neural stem cells, to move to areas of damage and repair myelin.

When neural stem cells are grown in the laboratory scientists have been able to reprogramme them to develop into several different types of brain cells, including oligodendrocytes. This latest research which took place in The Salk Institute for Biological Studies in California sought to determine if it would be possible to repeat these experiments in the brain.

A gene called Asc1 which is associated with oligodendrocyte development was introduced into the stem cells in the brain and caused neural stem cells to develop into oligodendrocytes.

This study confirms that adult stem cells in the brain retain their ability to be converted to certain other types of brain cells. Further research is needed to determine the significance of these finding to myelin repair in people with MS.

Dr Laura Bell at the MS Society said: 'Finding a way to cause stem cells which are already present in the brain to repair damaged myelin is an attractive potential treatment option for people with MS. This is early research but it is an important step and we look forward to seeing how the work progresses.'

Best Treatment For MS May Depend On Disease Subtype

Animal studies by University of Michigan scientists suggest that people who experience the same clinical signs of multiple sclerosis (MS) may have different forms of the disease that require different kinds of treatment.

The results, if borne out in further studies, point to a time when doctors will be able to target specific inflammatory processes in the body and more effectively help MS patients, using available drugs and new ones in the pipeline.

Since the 1990s, the treatment picture has brightened for people with multiple sclerosis in its most common form, relapsing-remitting MS. Beta interferon drugs and glatiramer acetate (marketed as Copaxone) have proved effective at decreasing the attack rate and suppressing inflammatory plaque development in many patients with MS. Yet why the drugs help some patients, but not others, has remained a mystery.

The U-M research team conducted the studies in mice that have a disease similar to MS: experimental autoimmune encephalomyelitis or EAE. The team found that different inflammatory chemicals, whose activity is linked to two different types of immune system T cells, could bring on the same paralysis and other MS-like signs. They also showed that drugs that block one of the inflammation pathways were not effective at blocking the other. The results, published online ahead of print, will appear in the July 7 issue of the Journal of Experimental Medicine.

"These two forms of disease differ in the specific anti-inflammatory agents that they are responsive to," says Benjamin Segal, M.D., the study's senior author and the director of the Multiple Sclerosis Center at the U-M Health System.

"We already know that some people respond better to the drugs beta interferon or Copaxone than others. Now we've shown proof that you can cause MS-like syndrome in mice due to qualitatively different types of inflammatory damage. As a result, these two kinds of inflammation likely require different approaches to treatment," says Segal. He directs the Holtom-Garrett Program in Neuroimmunology and is the Holtom-Garrett Family Professor of Neurology at the U-M Medical School.

Context:

MS is an inflammatory disease of the central nervous system believed to be autoimmune in nature. Certain cells in the body's immune system mount an inappropriate response against proteins in the nervous system, in particular myelin, the fatty substance that covers nerve axons. MS affects an estimated 2.5 million people worldwide. Symptoms, which vary widely, include numbness and weakness, incontinence, double vision, tremor, imbalance and pain.

In 85 percent of MS cases, patients begin with what is called a relapsing-remitting form of the disease. Initially, they have attacks in which they experience symptoms for a time, return to normal, then have attacks again. In the last 15 years, several beta interferon drugs and Copaxone have been effective in many patients at limiting the number of attacks. These drugs also can also decrease damage in the brain as visualized on MRI scans.

Research details:

Segal's research team injected one group of mice with an immune system T helper cell, Th1, long believed to play a role in MS, and another group with a T helper cell, Th17, whose potential role in MS has recently come to light. They measured the activity of specific inflammatory agents that are induced by each type of T cell as the immune system mounts its misguided attack on the myelin sheaths of nerve cells.

Both groups of mice developed similarly severe and rapid paralysis. But the researchers found clear differences in the inflammatory agents involved, called cytokines and chemokines, and in the resulting damage to the central nervous system.

Mice injected with Th1 cells showed a pattern of central nervous system inflammation that resembled that of common MS, with lesions filled with macrophages, a type of immune system defender cell. Mice injected with Th17 cells, however, had lesions filled with another immune cell type, neutrophils. In these mice, inflammation reached deep in central nervous system tissues and in the optic nerve.

In both groups of mice, the scientists tested the effects of neutralizing antibody drugs similar to drugs being developed against autoimmune diseases in humans. Some of the drugs inhibited disease in the Th17 mice, but not in the mice receiving Th1 cells. Other drugs were effective against both types of disease.

"That's our proof that these really are different mechanisms of disease," says Mark Kroenke, the study's first author and a Ph.D. student in immunology at U-M.

Implications:

It's not yet known whether the same differences will prove true in people with MS. But the study suggests the need to develop drugs tailored to affect distinct inflammation pathways that might drive different forms of relapsing-remitting MS.

"We speculate at some point being able to identify and measure active inflammatory agents in patients, and to develop customized profiles that would help predict what treatments will be effective," Segal says.

In addition, Segal says, the findings may aid the search for effective drugs for two difficult-to-treat diseases closely related to MS: neuromyelitis optica, which affects the optic nerve and spinal cord, and opticospinal MS, most common in Asia. The pattern of inflammation the team saw in the Th17-injected mice resembled the pattern in these variants of MS.

Other authors include: Anuska V. Andjelkovic, Ph.D., U-M Department of Pathology; and Thaddeus J. Carlson, Ph.D., University of Rochester School of Medicine and Dentistry.

Segal is on the scientific advisory board of the National MS Society, http://www.nationalmssociety.org/index.aspx

This work was supported by grants from the National Multiple Sclerosis Society and the National Institutes of Health.

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?”

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.

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.

Sincerely,

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.

Frank

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.

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.

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 president@whitehouse.gov 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!

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!

Sincerely,


Frank Austin

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

THE WHITE HOUSE
WASHINGTON

May 15, 2008

Mr. Frank Austin
XXXXXXXXXXXXXX
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 whitehouse.gov/stemcell. Thank you again for writing. President Bush sends his best wishes.

Sincerely,

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

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:
http://www.healthcentral.com/multiple-sclerosis/news-251327-66.html

So, what's your take on this?

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.

Sincerely,

Email Response from Senator Barbara Boxer

Responding to your message‏
From: senator@boxer.senate.gov
Sent: Thu 5/01/08 11:53 AM
To: f_frank_austin@hotmail.com



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, http://boxer.senate.gov. 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 http://thomas.loc.gov 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

Email letter from Senator Dianne Feinstein

U.S. Senator Dianne Feinstein responding to your message‏
From: senator@feinstein.senate.gov
Sent: Mon 4/28/08 2:18 PM
To: f_frank_austin@hotmail.com



Dear Mr. Austin:



Thank you for contacting me regarding multiple sclerosis. I appreciate hearing from you and welcome the opportunity to respond.



Since coming to the Senate, I have strongly supported funding for biomedical research at the National Institutes of Health, Centers for Disease Control and Prevention, and through the Department of Defense's Congressionally Directed Medical Research Programs. I believe these efforts hold tremendous promise to produce new treatments and possible cures for a myriad of conditions and diseases, including multiple sclerosis. I am pleased to inform you that I am a member of the Senate Multiple Sclerosis Caucus. Please be assured that I will continue to work to raise awareness and hope that a cure will soon be found for this disease.



Again, thank you for contacting me. If you should have any further comments or questions, please feel free to contact my Washington, D.C. office at (202) 224-3841. Best regards.




Sincerely yours,

Dianne Feinstein
United States Senator

In an Email to OCTA Customer Relations, a Fellow MS Traveller wrote:

04/23/2208

Customer Relations,

I am writing this letter to make you aware of a problem that I had. I experienced the problem this morning on Route 37, south bound leaving 1st and Euclid, at 10:24am, the bus number was 5520.

After I boarded the bus on my scooter, the coach operator put a restrain belt across the back of my scooter only. Not straps securing the armrests, which is normal. No front strap was attached to the tiller, or front control mast, which is also normal.

At about 10:35am the bus came to a very sudden stop. My scooter, with me in it, rolled forward, and tipped. My scooter is a 3 wheeler and the one restraint belt, which the driver had put across the back, did not restrain the scooter. The scooter and I were partially tipped over sideways.

I had to wait until the driver stopped to be righted back into a correct, safe position. Another passenger had to come over to help put me back into an “all wheels on the floor” position. Then, after the coach stopped at the next stop, the driver came back and finally secured my scooter properly.

Being thrown forward and hanging in midair, was not the type of ride I expected on this day.

Coach operators need to secure scooters and or wheelchairs properly with a 3-point method that will ensure their user’s safety.

Please help us with this, we can not do this for ourselves.

Thank you for your prompt attention to this matter,

Remember to...

* Accept that some days you're the pigeon, and some days you're the statue.

* Always keep your words soft and sweet, just in case you have to eat them.

* Always read stuff that will make you look good if you die in the middle of it.

* Drive carefully. It's not only cars that can be recalled by their maker.

* If you can't be kind, at least have the decency to be vague.

* If you lend someone $20 and never see that person again, it was probably worth it.

* It may be that your sole purpose in life is simply to be kind to others.

* Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.

* Nobody cares if you can't dance well. Just get up and dance.

* Since it's the early worm that gets eaten by the bird, sleep late.

* The second mouse gets the cheese.

* When everything's coming your way, you're in the wrong lane.

* Birthdays are good for you. The more you have, the longer you live.

* You may be only one person in the world, but you may also be the world to one person.

* Some mistakes are too much fun to only make once.

* We could learn a lot from crayons... Some are sharp, some are pretty and some are dull. Some have weird names, and all are different colors, but they all have to live in the same box.


*A truly happy person is one who can enjoy the scenery on a detour

2008 Walk MS; Irvine, CA April 12, 2008

As of 2:00pm April 14 team, "Frank" had generated $2559.00 in donations. Considering that my initial goals were $500 for myself and $1000 for the team, that ain't half bad! And we've got more to be registered!

Everyone out there in traffic should be aware that the, "Three Amigos" are on the prowl! One of them is a particular menace to society when he wheels around on a personal mobility device most commonly referred to to as a scooter. DMV can pull a person's drivers license but I've yet to hear of a comparable agency intent on protecting the general public from out-of-control disabled scooter operators!

I hesitate to raise that issue to either the California State Assembly or Senate. Imagine the bureaucratic nightmare that might produce.