Are you going to Chicago next week?

As I prepare to go host our chapter meeting today, I think the main thing on my mind is all the hard work taking place to grow the Vasculitis Foundation so that patients everywhere can benefit from improved education awareness and research programs. There are projects going on behind the scenes to improve education services for patients, and bring you into closer contact with other patients to share support.

The Vasculitis Foundation is the number one private fundraising organization for research into better treatments and an eventual cure for these horrible conditions. The more I learn about the Vasculitis Foundation, the more I am determined to help.

You want a cure? Then one of your best bets is Donate to the Vasculitis Foundation.

The best way you can help immediately, is by becoming a member. As your friends and family to become members of the foundation, and then be sure to renew your memberships. Consider contributing again when you can. Almost all funds go towards funding the research. If you like, you can even specify which programs you want your contribution to support.

Learn more about ways to contribute at the Vasculitis Foundation website:https://contribute.vasculitisfoundation.org/getinvolved

The second thing on my mind is the upcoming Vasculitis Foundation Patient Symposium next week in Chicago.

There are actually two main Vasculitis Symposia for patients this year: 

Chicago on April 21.

 Atlanta on July 21.

Check out the Vasculitis Foundation website for more information and to make arrangements to attend.

VF ANNOUNCES LOCATIONS FOR 2012 SYMPOSIA LOCATIONShttp://vasculitisfoundation.org/node/4591

These are outstanding opportunities for new patients especially to learn more about vasculitis, and also to meet other patients face to face. How long have you been struggling with your condition alone. Nobody else really gets it, right? Some people are understanding, but they can only support you. Others wonder when you will get better, as if they do not understand the meaning of the word, "incurable condition."

Vasculitis is very rare, but at the symposia, you have a chance to be among several hundred patients and caregivers with issues very similar to your own. It is a rare opportunity for sufferers of these rare conditions.

The other benefit is getting to attend presentations by some of the world's foremost vasculitis researchers and clinicians. No doctor knows it all, but these people know than most about vasculitis: How to diagnose it, and how to treat it.

When better treatments are developed the Vasculitis Foundation will be right there to report it. When a cure is found, the Vasculitis Foundation will be there to ring that bell and let the world know.

Become a member, and consider attending one or more symposia to get connected and learn more about these conditions.

And if you feel like talking about other ways to gain support and spread awareness locally, come meet me at one of the monthly meetings.

I will be at Deli-Berry on the second Saturday of every month at 3PM. DeliBerry is located at 2520 Juan Tabo Blvd NE, Albuquerque, NM. 

You dont need a reminder from me. Mark your calendars or subscribe to the chapter Google calendar so it updates automatically when I add or update an event.

Hope to see you there.

Local women create a 'dream room' for ailing 11-year-old

Local women create a 'dream room' for ailing 11-year-old

Keeping a positive outlook is a huge variable when managing a chronic illness successfully.

This "dream room" concept is a tremendous idea for boosting the morale of any patient, but young patients especially!

I will share this idea with other groups. Thanks to Jim Bornac for finding and sharing this news!

: Joseph Carpenter

On Fri, Sep 24, 2010 at 4:42 PM, wrote:

Local women create a 'dream room' for ailing 11-year-old

Cote said this year's room is being designed for Sarah Valade, an 11-year-old girl with Central Nervous System Vasculitis (CNSV), an inflammation of the the ...

http://www.timminstimes.com/ArticleDisplay.aspx?e=2772512

WHO Declares End to 2009 H1N1 Influenza Pandemic

The good news is the swine flu pandemic is officially over. (Read the press release below.)

As you all read this, remember that flu season is coming up. Alert your primary care physician to reserve your vaccine. Be sure to tell them you need the inactive vaccine (the shot, not the spray), and ask them to call you when the new flu vaccine becomes available. In case they are in short supply, immune supressed patients and their caregivers are high priority recipients for flu vaccine. Be polite, but you are eligible to receive the vaccine early.

I will say it one more time, just to make sure you all know. Immune suppressed patients and their caregivers, should NOT accept the live FluMist vaccine. That is the one they spray in your nose. The potential for catching an opportunistic infection in immuned suppressed prohibits the use of live vaccines.

For more information on this topic for autoimmune patients, see: http://www.flu.gov/individualfamily/healthconditions/arthritis/index.html

This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.

Here is the press release announcing the end of the so-called "Swine Flu."



News Release

FOR IMMEDIATE RELEASE
Tuesday, August 10, 2010

Contact: HHS Press Office
(202) 690-6343

WHO Declares End to 2009 H1N1 Influenza Pandemic

On August 10, 2010, the World Health Organization (WHO) International Health Regulations (IHR) Emergency Committee and the WHO Director-General, Dr. Margaret Chan, declared an end to the 2009 H1N1 influenza pandemic. This declaration was based on strong indications that influenza, worldwide, is transitioning toward seasonal patterns of transmission.

In the majority of countries, out-of-season 2009 H1N1 outbreaks are no longer being observed, and the intensity of 2009 H1N1 influenza virus transmission is lower than that reported during 2009 and early 2010. Members of the Emergency Committee further noted that the 2009 H1N1 viruses will likely continue to circulate for some years to come, taking on the behavior of a seasonal influenza virus.

This does not mean that the H1N1 virus has disappeared. Rather, it means current influenza outbreaks including those primarily caused by the 2009 H1N1 virus, show an intensity similar to that seen during seasonal epidemics. Pandemics, like the viruses that cause them, are unpredictable. WHO noted that continued vigilance is extremely important, and it is likely that the virus will continue to cause serious disease in younger age groups and pregnant women, at least in the immediate post-pandemic period.

The WHO Director-General ended the Public Health Emergency of International Concern in accordance with the International Health Regulations (2005). More information about the WHO declaration is available on the WHO website at http://www.who.int/mediacentre/news/statements/2010/h1n1_vpc_20100810/en/index.html.

Implications for United States

This is a formal WHO declaration regarding the end of the pandemic at the global level. The U.S. Public Health Emergency determination for 2009 H1N1 Influenza expired on June 23, 2010.

The only impact on the United States resulting from the WHO declaration will be a cessation in weekly reporting under the International Health Regulations (IHR) to the Pan American Health Organization and the World Health Organization. CDC has reported weekly to IHR since early in the pandemic.

There are no changes for the United States in terms of CDC’s recommendations for the upcoming influenza season and the United States is already proceeding with the understanding that the 2009 H1N1 virus is now part of seasonal influenza virus circulation.

As is customary, beginning in October, 2010, CDC will provide weekly reports of influenza surveillance information throughout the season with the publication of FluView available at www.cdc.gov/flu/weekly .

Protecting Yourself and Others from Influenza

CDC recommends a three-step approach to fighting flu: vaccination, everyday preventive actions and the correct use of antiviral drugs if your doctor recommends them. The first and most important step in protecting against the flu is to get a flu vaccine each season.

The U.S. 2010-2011 influenza vaccine will protect against an H3N2 virus, an influenza B virus, and the 2009 H1N1 influenza virus that caused the first global pandemic in more than 40 years and resulted in substantial illness, hospitalizations and deaths. In the United States, the CDC’s Advisory Committee on Immunization Practices recently recommended that everyone 6 months of age and older be vaccinated against influenza each season. Pregnant women, young children, and anyone with underlying health conditions like asthma, diabetes and neuromuscular diseases are at especially high risk for influenza-related complications and, therefore, should be vaccinated as soon as vaccine becomes available. Vaccine manufacturers are predicting an ample supply of influenza vaccine for the upcoming 2010-2011 U.S. influenza season.

Influenza (the flu) is a serious disease that can lead to hospitalization and sometimes even death. Anyone can get sick from the flu. For more information about influenza and how to protect yourself and your family, visit www.flu.gov.

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