PLease take a look at the Lupus Research site. We need all of the help we can get to give hope to the millions of people, and numbers growing each day of those with these life-alerting illnesses that still not much are known about them. The research institute along with researchers, doctors, nurses, patients and caretakers need Grant money, more projects, more advanced blood tests, genetically testing, and more to try and get to the bottom of these almost mystery diseases. You, your family, your friends, or someone you live around or know, probably suffers from the hundreds of autoimmune illnesses of which so little is known about. Fibromyalgia, Lupus, Multiple Sclerosis, Sjogren's, Raynauds, RA, just to name a few of these diseases, that have no cure at this time, and there is also little to offer as far as treatments, medications, awareness and education about them. Please help to give those like myself, new hope for research, medications, more knowledge for doctors, nurses and patients, plus so much more.
Please if you can take a moment to also send an email to your Representatives and/or Senators about this, along with your concerns about health care reform. This not only affects those like myself, with Lupus, and the other autoimmune diseases, but every citizen in the United States. Please see the link below:
http://www.lupusresearchinstitute.org/news/lupusnews/09/09/14/body-count-home
Here are the links where you can find the email addresses of your Congress men and women:
http://writerep.house.gov/writerep/welcome.shtml
http://www.doubleknot.com/openrosters/ShowPage.asp?36383139307L363331383339
or post the information on your myspace.com site, facebook, twitter or other blogs you may have.
Anywhere you can help to get this important news out will be deeply appreciated. My story, like the millions of others is a nightmare. From Chronic Clinical Fatigue, the mylar rash on the face, the organs these illnesses, diseases, and syndromes can affect, like the heart, lungs, liver and brain, to severe pain in the joints and other connective tissues, to the Lupus and Fibromyalgia fog, the horrible, worse than migraines, Lupus headaches, to ulcerated places in the mouth, throat, cracked and bleeding fingers, toes, and places on the skin, not being able to sleep, the anxiety, and depression, and emotional stigma these cause, to dealing with medications that have potential terrible side effects, and limited treatments due to just not being able to get enough research done to find how to treat these diseases... the list goes on and on.
Just like many others, I have been from one doctor to the next, one test after another test, blood work involving 20 or more tubes of blood in one setting, not able to go outside and enjoy the sun, due to it possibly leading to flares of these illnesses, and the other dozens of ways these illnesses have a dramatic negative impact on our lives.
Here is a portion of the email I received from the Lupus Research Foundation:
Please if you can take a moment to also send an email to your Representatives and/or Senators about this, along with your concerns about health care reform. This not only affects those like myself, with Lupus, and the other autoimmune diseases, but every citizen in the United States. Please see the link below:
http://www.lupusresearchinstitute.org/news/lupusnews/09/09/14/body-count-home
Here are the links where you can find the email addresses of your Congress men and women:
http://writerep.house.gov/writerep/welcome.shtml
http://www.doubleknot.com/openrosters/ShowPage.asp?36383139307L363331383339
or post the information on your myspace.com site, facebook, twitter or other blogs you may have.
Anywhere you can help to get this important news out will be deeply appreciated. My story, like the millions of others is a nightmare. From Chronic Clinical Fatigue, the mylar rash on the face, the organs these illnesses, diseases, and syndromes can affect, like the heart, lungs, liver and brain, to severe pain in the joints and other connective tissues, to the Lupus and Fibromyalgia fog, the horrible, worse than migraines, Lupus headaches, to ulcerated places in the mouth, throat, cracked and bleeding fingers, toes, and places on the skin, not being able to sleep, the anxiety, and depression, and emotional stigma these cause, to dealing with medications that have potential terrible side effects, and limited treatments due to just not being able to get enough research done to find how to treat these diseases... the list goes on and on.
Just like many others, I have been from one doctor to the next, one test after another test, blood work involving 20 or more tubes of blood in one setting, not able to go outside and enjoy the sun, due to it possibly leading to flares of these illnesses, and the other dozens of ways these illnesses have a dramatic negative impact on our lives.
Here is a portion of the email I received from the Lupus Research Foundation:
The Patients' Voice for Lupus Research
Dear Rhiannon,
As you read this with your morning coffee, dozens of advocates from the LRI National Coalition are spreading out across Capitol Hill to tell their representatives that more 1.5 million Americans have lupus—and it’s not only scary and unpredictable, but often devastatingly costly to treat.
We invite you to step right in to the Congressional offices with these advocates and add your “virtual” voice RIGHT NOW!
On Health Reform
Make coverage available to all, regardless of pre-existing conditions.
Eliminate lifetime caps on health benefits.
Include development of a regulatory pathway for the FDA to approve follow-on biologic drugs, keeping in mind patient safety and the physician-patient relationship.
Integrate educational provisions on prevention, wellness, and management of chronic diseases.
Build in ways to lessen the racial disparities in access to care of chronic diseases, such as lupus, which disproportionately affects minorities.
On NIH Research Funding
Sustain the nation’s medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill.
Keep the House’s funding level for the NIH, which amounts to a 3 percent increase above last year, and is $400 million higher than the Senate’s proposal. This increase is needed to return to robust, sustainable and predictable budget growth for NIH.
Biomedical research conducted at the NIH, including basic investigations, translational studies and clinical trials, will help lead to new desperately needed treatments options and a better of understanding of lupus.
On Funding for the National Lupus Education Program
ASK your representative to please send a letter of support to:
Labor-HHS Appropriations Chairman David Obey and Ranking Member Todd Tiahrt in the House
Labor-HHS Appropriations Chairman Tom Harkin and Ranking Member Thad Cochran in the Senate
to include $1 million in the final Conference Report for Fiscal Year 2010 Labor-HHS Appropriations Bill for the Office of Minority Health to continue lupus education efforts for health providers.
Many lupus patients often visit multiple doctors and go years before receiving a correct diagnosis. There is a profound need for improved professional awareness and education on lupus—a substantive effort to engage our nation’s health professionals in finding ways to improve lupus diagnosis and treatment.
Millions of Americans with lupus, and their families and friends, thank you for your effort!
From your desk chair…add your voice!
Email your elected officials in the House
Email your elected officials in the Senate
Update your status on Facebook
Tell your followers on Twitter
Post a video to YouTube
Write a bulletin on MySpace
Keep updating
your profiles throughout
the day.
Encourage your friends and followers to add their voices to our effort!
About the LRI - Pioneering Discovery to Prevent, Treat, and Cure Lupus
The Lupus Research Institute (LRI)—the world’s leading private supporter of innovative research in lupus—champions innovation, encourages scientific creativity and risks exploring uncharted territory to bring new scientific solutions to the complex and dangerous autoimmune disease of lupus. Founded by families and shaped by scientists, the Institute mandates sound science and rigorous peer review to uncover and support only the highest ranked novel research. Its bold and proven research strategy places the LRI at the forefront of lupus science as the Institute consistently achieves the breakthrough discoveries, novel insights and solid results that are changing the course of lupus research and bringing new hope to people with lupus nationwide. To learn more about lupus and the Lupus Research Institute, visit www.LupusResearchInstitute.org.
Support the LRI: http://www.lupusresearchinstitute.org/help
Connect with the LRI: Facebook Twitter MySpace YouTube
Lupus Research Institute
330 Seventh Avenue, Suite 1701, New York, NY 10001
T: 212.812.9881 F: 212.545.1843
e-mail: Lupus@LupusNY.org
Dear Rhiannon,
As you read this with your morning coffee, dozens of advocates from the LRI National Coalition are spreading out across Capitol Hill to tell their representatives that more 1.5 million Americans have lupus—and it’s not only scary and unpredictable, but often devastatingly costly to treat.
We invite you to step right in to the Congressional offices with these advocates and add your “virtual” voice RIGHT NOW!
On Health Reform
Make coverage available to all, regardless of pre-existing conditions.
Eliminate lifetime caps on health benefits.
Include development of a regulatory pathway for the FDA to approve follow-on biologic drugs, keeping in mind patient safety and the physician-patient relationship.
Integrate educational provisions on prevention, wellness, and management of chronic diseases.
Build in ways to lessen the racial disparities in access to care of chronic diseases, such as lupus, which disproportionately affects minorities.
On NIH Research Funding
Sustain the nation’s medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill.
Keep the House’s funding level for the NIH, which amounts to a 3 percent increase above last year, and is $400 million higher than the Senate’s proposal. This increase is needed to return to robust, sustainable and predictable budget growth for NIH.
Biomedical research conducted at the NIH, including basic investigations, translational studies and clinical trials, will help lead to new desperately needed treatments options and a better of understanding of lupus.
On Funding for the National Lupus Education Program
ASK your representative to please send a letter of support to:
Labor-HHS Appropriations Chairman David Obey and Ranking Member Todd Tiahrt in the House
Labor-HHS Appropriations Chairman Tom Harkin and Ranking Member Thad Cochran in the Senate
to include $1 million in the final Conference Report for Fiscal Year 2010 Labor-HHS Appropriations Bill for the Office of Minority Health to continue lupus education efforts for health providers.
Many lupus patients often visit multiple doctors and go years before receiving a correct diagnosis. There is a profound need for improved professional awareness and education on lupus—a substantive effort to engage our nation’s health professionals in finding ways to improve lupus diagnosis and treatment.
Millions of Americans with lupus, and their families and friends, thank you for your effort!
From your desk chair…add your voice!
Email your elected officials in the House
Email your elected officials in the Senate
Update your status on Facebook
Tell your followers on Twitter
Post a video to YouTube
Write a bulletin on MySpace
Keep updating
your profiles throughout
the day.
Encourage your friends and followers to add their voices to our effort!
About the LRI - Pioneering Discovery to Prevent, Treat, and Cure Lupus
The Lupus Research Institute (LRI)—the world’s leading private supporter of innovative research in lupus—champions innovation, encourages scientific creativity and risks exploring uncharted territory to bring new scientific solutions to the complex and dangerous autoimmune disease of lupus. Founded by families and shaped by scientists, the Institute mandates sound science and rigorous peer review to uncover and support only the highest ranked novel research. Its bold and proven research strategy places the LRI at the forefront of lupus science as the Institute consistently achieves the breakthrough discoveries, novel insights and solid results that are changing the course of lupus research and bringing new hope to people with lupus nationwide. To learn more about lupus and the Lupus Research Institute, visit www.LupusResearchInstitute.org.
Support the LRI: http://www.lupusresearchinstitute.org/help
Connect with the LRI: Facebook Twitter MySpace YouTube
Lupus Research Institute
330 Seventh Avenue, Suite 1701, New York, NY 10001
T: 212.812.9881 F: 212.545.1843
e-mail: Lupus@LupusNY.org
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