Michigan-Based American Autoimmune Related Diseases Association (AARDA) Kicks Off National Women’s Health Week with Victorian Tea Luncheon and Silent Auction, May 8

East Detroit, MI, April 16, 2010: The American Autoimmune Related Diseases Association (AARDA) is joining the U.S. Department of Health and Human Services’ Office on Women’s Health in celebrating National Women’s Health Week. On the Saturday before Mother’s Day, May 8, 2010, AARDA will hold a Victorian Tea Luncheon at the historic Dearborn Inn: A Marriott Hotel where women in the community will be able to enjoy an afternoon of historic gentility with an elegant tea luncheon, silent auction, and performance by a Victorian dance troupe, the Pleasant Moments Vintage Dancers.  Participants will celebrate the women in their lives while supporting research, awareness, and education of autoimmune disase, category which affects more than 30 million women in the United States alone and targets women 75 percent more often than men.

National Women’s Health Week is a nationwide initiative that calls attention to the importance of women’s health. The theme for National Women’s Health Week is “It’s Your Time.” During the week, families, health organizations, businesses, communities, the government and individuals come together to raise awareness about women’s health issues and educate women about simple steps they can take for longer, healthier and happier lives.

Autoimmune diseases tend to affect women in the prime of their lives, women with families and demanding careers-women who too often may tend to ignore symptoms that could be telltale signs of an autoimmune disease.  Early diagnosis and early onset of treatment are keys to ensuring that women do not needlessly suffer irreversible organ damage and other problems that could lead to permanent disability and sometimes death.  Therefore, during this time, National Women’s Health Week, AARDA is committed to ensuring that women take the time to think about their own health and ask themselves, “Could I be at risk for an autoimmune disease?”  Autoimmune diseases run in families.  For example, if your mother had rheumatoid arthritis (RA) and your sister had celiac disease, you could be at higher risk for developing one of the 100+ autoimmune diseases. 

 “National Women’s Health Week is important because it encourages women to take time for their health,” says Virginia T. Ladd, AARDA President and Executive Director. “Women are often the caregivers for their families and, as a result, forget to make their own health a priority. With National Women’s Health Week, we remind women that they too need to visit their doctor, make sure their screenings are up to date and just take a minute to think about their health and their own risk factors for autoimmune diseases in particular.”

National Women’s Health Week kicks off on Mother’s Day, May 9, and will be celebrated until May 15, 2010. National Women’s Checkup Day — a day where women across the country are urged to visit their doctors — will be held on May 10. In addition, the Woman Challenge, an eight week online physical activity program, will be held May 9–July 3. For more information about National Women’s Health Week, please visit http://www.womenshealth.gov/whw. To learn more about AARDA and autoimmune diseases, please visit www.aarda.org.  To register to attend AARDA’s kick-off event for National Women’s Health Week, the Victorian Tea Luncheon,  please contact AARDA by phone at 586-776-3900 or via email aarda@aarda.org. 

The Cause

On April 23, 2009, Rep. Patrick J. Kennedy (D-RI) re-introduced the PARAiD Act of 2009.  The act has the potential to infuse more than $43 million into new funding for autoimmune disease research, awareness, and education.  H.R. 2084, also called the �Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009� (PARAiD), will bring new funding to the following areas: 

• Research on Environmental Triggers of Autoimmune Diseases


• Grants to Increase Awareness of Autoimmune Diseases


• Grants for Education on Relationship between Autoimmune Diseases and Mental Illness


• Loan Repayment Program Regarding Physician Research on Autoimmune Diseases


• Research and Database on Biomarkers of Autoimmune Diseases


• Click here to read the complete text of the PARAiD Act of 2009:
  http://thomas.loc.gov/cgi-bin/bdquery/z?d111:h2084
  

Action Needed
To Reach our goal of 80 co-sponsors in 90 days each of  you must:

• Write a letter to your congressman asking for support of H.R. 2084 and requesting that he/she become a co-sponsor.  Be sure to include details of your story with autoimmune disease, letting your Rep. know why this is important to you as a constituent. Send by Email or Fax.


• Call your congressional representative to ask for support for H.R. 2084 and request that he/she become a co-sponsor.


• Forward this message to friends and colleagues requesting that they do the same.


• Please note that ANY letters, phone calls, or visits must be reported back to AARDA so that we can follow up and ensure the co-sponsorship!  Send us copies of all correspondence and dates of calls and visits to aarda@aarda.org .

How to Get Started!

• Find your congressional representative: https://writerep.house.gov/writerep/welcome.shtml


• Write your email using our sample template (see below).  Personalize where indicated.


• Send your email/fax of support to your congressional representative https://writerep.house.gov/writerep/welcome.shtml and send AARDA a copy of your correspondence so that we can track your support � Simply cut/copy and paste and Email it to us at aarda@aarda.org.


• Call your representative to ask support for H.R. 2084 and request that he/she become a co-sponsor because of the impact that autoimmune diseases has had on your life and because you are a constituent who wants his/her support.  Get the phone number for your congressional representatives - https://writerep.house.gov/writerep/welcome.shtml

Sample Support Letter: 

January XX, 2010

The Honorable INSERT NAME
U.S. House of Representatives
Washington, DC 20515

Dear Representative XX LAST NAME XX:

As your constituent and one of the 23.5 million Americans currently suffering from one of the more than 80 chronic autoimmune diseases, I implore you to support H.R. 2084, the �Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009� (PARAiD), which has been referred to the House Committee on Energy and Commerce, Subcommittee on Health. 

INSERT PERSONAL STORY (One paragraph)

Introduced by Representative Patrick J. Kennedy (D-RI), and Representative Cliff Stearns (R-FL), the PARAiD Act calls for a Congressional authorization to support funding for autoimmune disease research, awareness, and prevention. The PARAiD Act will fund vital sectors of research, innovative programs, and aid in the discovery of preventive measures for autoimmune disease patients. The bill includes research on environmental triggers of autoimmune diseases, grants to increase awareness, grants for education on the relationship between autoimmune diseases and mental illness, a loan repayment program regarding physician research on autoimmune diseases, and research and database development on biomarkers of autoimmune disease.

Passage of H.R. 2084 has the potential of being an important catalyst in developing solutions, awareness, and preventive measures for a category of diseases, which are burdening the American family at a cost of more than $100 billion per year.  As your constituent, I seek your co-sponsorship of H.R. 2084.

Sincerely,

INSERT NAME and ADDRESS

Continue reading "80 Co-Sponsors in 90 Days to Pass H.R. 2084,..." »

 East Detroit, MI April 12, 2010:  “What Every American Needs to Know about Autoimmune Disease” forum is taking place Saturday, April 17, 2010, from 1:00 to 4:00 p.m. at the Marriot Houston Hobby Airport Hotel, Pasdena Room (9100 Gulf Freeway, Houston, TX). The forum is one of a series of programs being produced around the country to provide necessary information for autoimmune disease patients, their families and friends, as well as the general public. 

A growing concern worldwide, autoimmune diseases affect women 75 percent more often than men, are rising in the U.S. and around the world, and currently are one of the top 10 killers of women under the age of 65.  Sessions at the FREE Public forum will include “What Is Autoimmunity?” which will provide information on the cause of autoimmunity, the fact that it runs in families, and knowing one’s risk factors for autoimmune disease.  Also, the forum features sessions on “What’s New in Autoimmune Disease Research and New Therapies on the Horizon,” as well as “Coping with Autoimmune Disease,” highlighting lifestyle adjustments to assist with coping, and family relationships affected by a family member who is suffering with an autoimmune disease. 

The program will include tips for patients on how to become their own best advocate in taking responsibility for one’s health in an environment with limited awareness of one’s disease by both doctors and the public alike.  Top names in autoimmune research, literature, and advocacy will be featured at the forum, such as world renowned autoimmunity expert Noel R. Rose, M.D., Ph.D., Director of Johns Hopkins University Center for Autoimmune Disease Research.  

Additionally, the program will include award-winning medical journalist and co-author of The Autoimmune Connection, Rita Baron-Faust, as well as Virginia Ladd, President/Executive Director of host organization the American Autoimmune Related Diseases Association (AARDA).  hile the program is free, space is limited.  To reserve your seat, please call (586) 776-3900 or register online at http://houstonpublicforum.eventbrite.com/. 

 

 

 

 

 

Friday, January 8, 2010, the Food and Drug Administration (FDA) approved ACTEMRA® (tocilizumab), a new biologic response modifier for adult patients with moderately to severely active rheumatoid arthritis (RA). 

We at AARDA are pleased with the FDA’s approval of this new drug as it offers a promising new option available to those suffering from this debilitating autoimmune disease, especially those who have failed other forms of treatment.  Of the more than 80 autoimmune diseases, RA is one of the most common and one of the more difficult autoimmune rheumatic diseases to control.  It is a progressive disease that can affect many joints, most commonly the small joints of the hands.  Inflammation and thickening of the tissue that lines the joints, which is the result of an autoimmune attack on the tissue, causes pain and swelling and, if left untreated or inadequately or improperly treated may progress to cause destruction of the bones, deformity and, eventually, disability. 

RA affects all ethnic groups with females 2.5 times more likely than males to develop the disease.  The overall prevalence of RA in the United States is 1.3 million. 

In the treatment of RA, as in the treatment of all the other autoimmune diseases, AARDA believes it is critical for patients and physicians to work together to find the most effective treatment regimen. 

To see the full release, click the following link:

http://www.newswise.com/articles/american-autoimmune-related-diseases-association-aarda-statement-on-the-fda-approval-of-a-new-treatment-for-rheumatoid-arthritis

 

New Immune Link to Inflammation & Scarring in Graves' Disease

 

Newswise — A cell type that causes significant scarring in lung disease appears to have a similar effect in Graves’ disease, University of Michigan Health System researchers have found. The cells, called fibrocytes, are present at a higher than normal frequency in patients with Graves’ disease, according to a new study, the first to associate fibrocytes with this autoimmune disease.

The discovery is a major step forward in explaining how and why the orbit of the eye is subject to scarring and inflammation in Graves' disease.

The findings may also lead to new treatment strategies to target scarring or fibrosis, say authors Raymond Douglas, M.D., Ph.D., and Terry Smith, M.D., specialists in Graves’ disease at the University of Michigan Kellogg Eye Center. The study appears in the January issue of the Journal of Clinical Endocrinology & Metabolism.

Graves’ disease is an autoimmune disorder which results in an overactive thyroid. Up to half of those affected by the disease will develop inflammation or fibrosis around their eyes, creating the bulging appearance associated with Graves' eye disease, also called thyroid-associated ophthalmopathy. Excessive scarring can cause such manifestations as double vision or even loss of vision.

“Today we have medications to reduce inflammation, but these drugs typically do not treat the fibrotic effects of thyroid eye disease,” says Douglas, oculoplastics surgeon. “Our study is the first to implicate fibrocytes in the disease process, a finding that should open up new possibilities for treatment.”

Fibrocytes are immune cells derived from bone marrow that circulate through the bloodstream. They can infiltrate tissue, like the lungs, kidney, and liver, generating excess connective tissue and areas of fibrosis, for example, following pulmonary or kidney injury.

To determine whether fibrocytes play a similar role in Graves’ disease, these investigators and their colleagues examined tissue samples from 70 patients with the disease and compared them to 25 healthy subjects. The samples were gathered while Douglas and Smith were on the faculty of the University of California at Los Angeles. They found that fibrocytes were present at substantially higher frequencies—as much as five times greater—in patients with Graves’ disease. These levels were observed in both the bloodstream and in the orbital tissues of patients who had developed thyroid eye disease.

In earlier studies, Douglas and Smith identified the antigens that trigger the overactive immune response in Graves’ disease. Now they report that fibrocytes express the same antigens: thyroid-stimulating hormone receptor (TSHR) and insulin-like growth factor-1 receptor (IGF-1R). In addition, the Kellogg researchers say, when these receptors are activated, they produce a large quantity of cytokines which could stimulate immune cells to the orbit, causing inflammation in thyroid eye disease.

“We now have a much clearer picture of the disease process, including the pathway by which fibrocytes reach the orbit,” says Douglas. “Drugs currently under development for other fibrotic diseases are designed to disrupt this pathway and prevent fibrocytes from reaching their target.” According to Douglas, “These therapies may be just as effective for our patients with thyroid eye disease.”

As follow-up to the study, the Kellogg researchers plan to more fully identify the role of fibrocytes in the disease process and test whether several new agents, such as rituximab, can reduce these cells as they circulate through the bloodstream. The authors also recently demonstrated that rituximab was highly effective in treating patients with severe Graves' disease.

Reference: Increased Generation of Fibrocytes in Thyroid-Associated Ophthalmopathy, Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2009-1614

Funding support includes grants from the National Institutes of Health, Research to Prevent Blindness, and the Bell Charitable Foundation.

Learn more: Kellogg Eye Center: Graves' Eye Disease http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

Related news: Researchers find new way to attack inflammation in Graves’ eye disease (11/6/2009)
http://www2.med.umich.edu/prmc/media/newsroom/details.cfm?ID=1367

An interesting press release on severity of H1N1 and a potential link to autoimmune disease

Public release date: 15-Dec-2009
Contact: Alex Radkewycz
Alexandra.Radkewycz@uhn.on.ca
416-340-3895
University Health Network

First immunological clue to why some H1N1 patients get very ill or die

An international team of Canadian and Spanish scientists have found the first potential immunological clue of why some people develop severe pneumonia when infected by the pandemic H1N1 virus.

The study analyzed different levels of regulating molecules for 20 hospitalized patients, 15 outpatients and 15 control subjects in 10 Spanish hospitals during the first pandemic wave in July and August 2009. Researchers from the Hospital Clinico Universitario de Valladolid in Spain and the University Health Network found high levels of a molecule called interleukin 17 in the blood of severe H1N1 patients, and low levels in patients with the mild form of the disease.

Interleukin 17 is produced by the body and is important in the normal regulation of white blood cells which fight infection and disease. In certain circumstances, the molecule becomes "out of control", leading to inflammation and autoimmune diseases. The research paper titled, "Th1 and Th17 hypercytokinemia as early host response signature in severe pandemic influenza" is published in the December issue (13) of the Critical Care journal: http://ccforum.com/ .

"In rare cases, the virus causes lung infections requiring patients to be treated in hospital. By targeting or blocking TH17 in the future, we could potentially reduce the amount of inflammation in the lungs and speed up recovery," says Dr. David Kelvin, the leader of the Canadian team, Head of the Experimental Therapeutics Division, Toronto General Hospital Research Institute, University Health Network and Professor of Immunology, University of Toronto. Dr. Kelvin added that the clinical applications of this work is still many years away

Dr. Kelvin did note, however, that a test to determine who has high levels of the molecule is possible in the near future. "A diagnostic test could let us know early who is at risk for the severe form of this illness quickly," he said, adding that high levels would indicate a failure of the immune system to eliminate the virus, similar to what happened during the 1918 Spanish flu when huge numbers of deaths occurred due to a deadly influenza A virus strain of subtype H1N1.

Dr. Jesus Bermejo-Martin, the coordinator of the Spanish team, thinks that identifying drugs able to regulate the activity of IL-17 may provide alternative treatments for patients with severe H1N1.

About University Health Network:

University Health Network consists of Toronto General, Toronto Western and Princess Margaret Hospitals. The scope of research and complexity of cases at University Health Network has made it a national and international source for discovery, education and patient care. It has the largest hospital-based research program in Canada, with major research in cardiology, transplantation, infectious diseases, neurosciences, oncology, surgical innovation, and genomic medicine. The Toronto General Research Institute has more than 350 scientists, students and support staff, more than $65 million in external funding, and its staff is published in more than 600 publications a year. University Health Network is a research and teaching hospital affiliated with the University of Toronto.