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?”
Monday, June 30, 2008
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.
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.
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
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
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.
"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.
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.
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 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!
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!
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!
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
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
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:
http://www.healthcentral.com/multiple-sclerosis/news-251327-66.html
So, what's your take on this?
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?
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.
Sincerely,
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,
Thursday, May 01, 2008
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
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
Monday, April 28, 2008
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
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
Sunday, April 27, 2008
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,
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,
Wednesday, April 16, 2008
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
* 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
Monday, April 14, 2008
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.
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.
Saturday, April 05, 2008
Walk MS Bears available now!
Walk MS Bears available now!
1 ea. $10 or 1 of ea. for $18
Email your order to:
f_frank_Austin@hotmail.com
Indicate the Quantity and Color (Green or Purple)
An invoice will then be emailed to you with payment instructions, both online or personal check.
Include your mailing address for shipment!
All proceeds to my Walk MS fundraising effort!
Friday, March 07, 2008
MS Awareness Week
March 10-17, 2008
Suggestions from the National Multiple Sclerosis Society Website:
Monday:
Commit to seven days of action and take simple daily actions throughout the week that make a difference
Tuesday:
Send an action alert to your federal representative asking for an increase in MS research
Wednesday:
Watch the Moving Forward film festival debut on Second Life
Thursday:
If you haven’t committed to seven days of action, there is still time to get involved
Friday:
Check out what our corporate partners are doing to support the MS movement through our new Movement Marketplace
Saturday:
Sign up for a Bike MS or Walk MS event – if you already have, ask two friends or family members to join you!
Sunday:
Thank you for moving us closer to a world free of MS
Personally, I'll be in Sacramento CA March 10-12 attending the California NeuroAlliance Conference, visiting State Assembly Members/Senators and supporting (or maybe even opposing) legislation that impacts the lives and caregivers of those with a wide range of Neurologic conditions.
Then, on the 14th I will attend an Emergency Preparedness Workshop sponsored by the California Volunteers, the newest cabinet level department on the Governor's staff.
I'm still looking for contributors to my Walk MS fund!
Suggestions from the National Multiple Sclerosis Society Website:
Monday:
Commit to seven days of action and take simple daily actions throughout the week that make a difference
Tuesday:
Send an action alert to your federal representative asking for an increase in MS research
Wednesday:
Watch the Moving Forward film festival debut on Second Life
Thursday:
If you haven’t committed to seven days of action, there is still time to get involved
Friday:
Check out what our corporate partners are doing to support the MS movement through our new Movement Marketplace
Saturday:
Sign up for a Bike MS or Walk MS event – if you already have, ask two friends or family members to join you!
Sunday:
Thank you for moving us closer to a world free of MS
Personally, I'll be in Sacramento CA March 10-12 attending the California NeuroAlliance Conference, visiting State Assembly Members/Senators and supporting (or maybe even opposing) legislation that impacts the lives and caregivers of those with a wide range of Neurologic conditions.
Then, on the 14th I will attend an Emergency Preparedness Workshop sponsored by the California Volunteers, the newest cabinet level department on the Governor's staff.
I'm still looking for contributors to my Walk MS fund!
Thursday, March 06, 2008
In an Email from the MS Action Network
Announcing the New Congressional MS Caucus in the Senate
Senator Byron Dorgan (ND) and
Senator Orrin Hatch (UT) have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill. Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions. Once the Senate MS Caucus is formerly announced, you will be able to help recruit your Senators to join.
The House MS Caucus is growing significantly — now 72 members. View the most up-to-date list in the left column of the MS Activist Blog.
Senator Byron Dorgan (ND) and
Senator Orrin Hatch (UT) have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill. Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions. Once the Senate MS Caucus is formerly announced, you will be able to help recruit your Senators to join.
The House MS Caucus is growing significantly — now 72 members. View the most up-to-date list in the left column of the MS Activist Blog.
Tuesday, March 04, 2008
We are MS Activists
In an email I received this morning!
Dear GRC Members,
I am pleased to forward this message to all of you regarding the recognition our chapter recently received at the National MS Society’s Programs Conference. Due to the tremendous activism and advocacy over the prior year, the Pacific South Coast Chapter has won the Chapter of Excellence in Advocacy Award. Great work everyone and cheers to the year ahead!! I am truly honored to be a part of this team.
Sincerely,
Dear GRC Members,
I am pleased to forward this message to all of you regarding the recognition our chapter recently received at the National MS Society’s Programs Conference. Due to the tremendous activism and advocacy over the prior year, the Pacific South Coast Chapter has won the Chapter of Excellence in Advocacy Award. Great work everyone and cheers to the year ahead!! I am truly honored to be a part of this team.
Sincerely,
Monday, March 03, 2008
From the Orange County Register January 21, 2008
Getting the job done
Volunteer with multiple sclerosis finds a way to help
By ERIKA M. TORRES
STAFF WRITER
Tustin resident Frank Austin, a volunteer who has multiple sclerosis, was honored by the National Multiple Sclerosis Society's Pacific South Coast Chapter as its 2007 Activist of the Year.
According to the MS Society, Austin's selection was based on his efforts to assist disabled persons by serving on various committees, as well as his role as leader of a self-help group for men with MS.
MS is a chronic and disabling disease of the central nervous system with no known cure.
Austin worked for office equipment companies for more than 20 years before his diagnosis with MS in 1997. He and wife, Corinne, have been married for 25 years. They have three grown children.
Q:Why do you think you were honored?
A:I was involved in a lot of stuff last year. I do think we did a tremendous job with our advocacy work with OCTA. A year ago, their paratransit service was in horrible shape.
What they've done now is put together a real time system; drivers are now online, they're doing everything in real time. They're keeping track and they know where all their buses are every day.
I think OCTA and their contractor did a tremendous job of getting it together, but I think a part of it was we were standing there and they had to look at us in the face.
Q:What has caused you to become so actively involved?
A: What else am I going to do? (laughs) I have MS. I am on Social Security disability. I haven't worked for five years. Obviously I wanted to do something I care about and I'm a bit of a workaholic and this seemed like an obvious thing to do. It's now my life.
Q:How has MS impacted your life and how do you deal with it?
A:Well it's taken me out of the workforce. I have some problems with the ability to stand. I get fatigued. My mobility is limited to about 200 feet to 200 yards depending on the day. I've been fortunate; my wife is tremendous.
This disease treats everyone different. I see a lot of people who just withdraw and go into their shell and they just kind of wither. Their self-esteem is gone and they just can't stand up to it anymore. I refuse to be that way. I'm going to do things as long as I can and when I can't do it the way I did it before I'll try and find another way to get the job done.
Contact the writer: 949-553-2918 or etorres@ocregister.com
Volunteer with multiple sclerosis finds a way to help
By ERIKA M. TORRES
STAFF WRITER
Tustin resident Frank Austin, a volunteer who has multiple sclerosis, was honored by the National Multiple Sclerosis Society's Pacific South Coast Chapter as its 2007 Activist of the Year.
According to the MS Society, Austin's selection was based on his efforts to assist disabled persons by serving on various committees, as well as his role as leader of a self-help group for men with MS.
MS is a chronic and disabling disease of the central nervous system with no known cure.
Austin worked for office equipment companies for more than 20 years before his diagnosis with MS in 1997. He and wife, Corinne, have been married for 25 years. They have three grown children.
Q:Why do you think you were honored?
A:I was involved in a lot of stuff last year. I do think we did a tremendous job with our advocacy work with OCTA. A year ago, their paratransit service was in horrible shape.
What they've done now is put together a real time system; drivers are now online, they're doing everything in real time. They're keeping track and they know where all their buses are every day.
I think OCTA and their contractor did a tremendous job of getting it together, but I think a part of it was we were standing there and they had to look at us in the face.
Q:What has caused you to become so actively involved?
A: What else am I going to do? (laughs) I have MS. I am on Social Security disability. I haven't worked for five years. Obviously I wanted to do something I care about and I'm a bit of a workaholic and this seemed like an obvious thing to do. It's now my life.
Q:How has MS impacted your life and how do you deal with it?
A:Well it's taken me out of the workforce. I have some problems with the ability to stand. I get fatigued. My mobility is limited to about 200 feet to 200 yards depending on the day. I've been fortunate; my wife is tremendous.
This disease treats everyone different. I see a lot of people who just withdraw and go into their shell and they just kind of wither. Their self-esteem is gone and they just can't stand up to it anymore. I refuse to be that way. I'm going to do things as long as I can and when I can't do it the way I did it before I'll try and find another way to get the job done.
Contact the writer: 949-553-2918 or etorres@ocregister.com
Saturday, March 01, 2008
Congressionally Directed Medical Research Program
February 27, 2008
The Honorable John Campbell
House of Representatives
1728 Longworth House Office Building
Washington, DC 20515-0548
Representative Campbell:
Please support a $15 million appropriation to the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations to fund multiple sclerosis research. I ask that you show your support by signing the Dear Colleague letter regarding this issue being circulated by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D.(R-TX).
MS is a chronic, unpredictable, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause is still unknown and there is no cure.
Current medical treatments are not effective for many people and cannot be tolerated by many others.
I am a Vietnam Veteran who exhibited my first MS symptoms within 10 years of my return from Southeast Asia.
Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS. A study in the Annals of Neurology, for example, identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies. And an epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS.
Dr. Mitch Wallin, Associate Director of Clinical Care at the VA's MS Center of Excellence-East, says that "current evidence points to an environmental trigger initiating the disease in a genetically susceptible host. The association of neurologic disease and GW (Gulf War) service may be related to a variety of potentially hazardous environmental exposures that were present in the war theater."
The DoD has an obligation to fund MS research related to service during the Gulf War. Not only would this research benefit our Gulf War veterans, but would also benefit all those who live with multiple sclerosis and related diseases.
I ask that you support MS research by signing Congressmen Carnahan and Burgess' Dear Colleague letter and joining us in our request for $15 million from the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations. Thank you for helping us move closer to a world free of MS.
Sincerely,
Frank Austin
The Honorable John Campbell
House of Representatives
1728 Longworth House Office Building
Washington, DC 20515-0548
Representative Campbell:
Please support a $15 million appropriation to the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations to fund multiple sclerosis research. I ask that you show your support by signing the Dear Colleague letter regarding this issue being circulated by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D.(R-TX).
MS is a chronic, unpredictable, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause is still unknown and there is no cure.
Current medical treatments are not effective for many people and cannot be tolerated by many others.
I am a Vietnam Veteran who exhibited my first MS symptoms within 10 years of my return from Southeast Asia.
Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS. A study in the Annals of Neurology, for example, identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies. And an epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS.
Dr. Mitch Wallin, Associate Director of Clinical Care at the VA's MS Center of Excellence-East, says that "current evidence points to an environmental trigger initiating the disease in a genetically susceptible host. The association of neurologic disease and GW (Gulf War) service may be related to a variety of potentially hazardous environmental exposures that were present in the war theater."
The DoD has an obligation to fund MS research related to service during the Gulf War. Not only would this research benefit our Gulf War veterans, but would also benefit all those who live with multiple sclerosis and related diseases.
I ask that you support MS research by signing Congressmen Carnahan and Burgess' Dear Colleague letter and joining us in our request for $15 million from the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations. Thank you for helping us move closer to a world free of MS.
Sincerely,
Frank Austin
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