Thursday, December 16, 2010

Email from this blog is now "fixed"

For the record, and so you see how it will look, I am also posting this message to the blog.

---------- Forwarded message ----------
From: Joseph Carpenter
Date: Thu, Dec 16, 2010 at 10:46 PM
Subject: Email from the NMVasculitis blog is now "fixed"
To: NMVasculitis


Ladies and gentlemen,

Security Change To Blogger Leaves BlogSend Email Distribution Broken

As you all know, the blogs posts were sent automatically to our Google Groups mailing list, and then you got a copy as if I had sent it to you personally. That feature was broken in mid-November. I did not notice until December, so if you missed a few announcements, please visit the blog to read them at your convenience.

The big deal is this. Instead of appearing to come from the posting author, usually all posts coming from Blogger will appear to come from Blogger <no-reply@blogger.com>, regardless of who wrote them.  

I have set up the workaround, so instead of appearing to come from "Joseph Carpenter", group messages that originate from the blog will appear to come from "Blogger". 

It also means that when you reply to one of those posts, instead of coming to me, you will have to send it to the group, or manually add my address back in the recipient field. It is a pain in the butt.

All the people who get the Google Group mail from NMVasculitis, must add "no-reply@blogger.com" to their whitelist of acceptable senders if they have a spam blocking tool.

I have sent messages declaring my disapproval, but you know how it is with 800 pound gorillas. They pretty much do what they like.

I will give it a month or so, then if they do not fix this in a satisfactory way, I may choose to move my blog and/or website to another platform to regain the easy management with Email notifications. 

WHAT HAPPENED FOR ANYONE WHO CARES TO KNOW

Google Blogger made a change to the way they send out Email. They no longer spoof the author address, which was a good thing, but instead use no-reply@blogger.com as the reply to address. That works on paper as a temporary fix to some unidentified issue they were having, but breaks several real world functions in the way Blogger interacts with Google Groups. 

If you manage a blog in Blogger that is also set to send mail to a Google Group, here is what you need to know... To workaround this error, the google group owner must add no-reply@blogger.com as a member of the mailing list. Then you have to set that new "member" to receive no Email, and set them so that all posts are moderated. Otherwise, anyone who spoofs the no-reply@blogger.com address, and it will happen, will also be able to spam your group.

Thank you,


--
 
--
Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico
Parent, daughter with CSS (DX March '08)

Vasculitis Foundation in New Mexico - Albuquerque 

Test Post 5 - Does this fix BlogSend?

Ladies and gentlemen,

I noticed earlier tonight that the feature that copies blog entries to the mailing list was not working.

I believe that stopped working in November when Google Groups made a change to the way they send out Email. they no longer spoof the author address, but instead use no-reply@blogger.com as the reply to address.

This is the latest in a series of tests, and the first one I suspect will actually send to the list again.

If you get more than one of these Test Post messages, please bear with me while I work out the kinks.

Thank you,

Joseph Carpenter

Test Post 3 - Still troubleshooting No Email from blogger

Test Post 3 - Still troubleshooting No Email from blogger

Test Post 2 - BlogSend is broken and I am working on it.

Testing a post sent directly to me, so I can troubleshoot the reply-to address coming from Blogger.

Test Post December 16th

It has come to my attention that the mailing list does not seem to be working properly.

This message is a test to help troubleshoot that issue.

If you see one or more of these "Test Post" messages come in, please just delete them and bear with me while I figure out what is going on.

December Meeting CANCELLED due to freezing roads

Sorry for the very short notice folks.

I am stuck in another commitment across town. Meaghan was going to cover the meeting tonight, but the roads here are icing up early, so I told her to stay home. There are a few brochures at Deli-Berry, and I am going to arrange with the owners so anyone who shows up tonight can get a small yogurt on me for showing up.

The best advice I have for you is stay home, be safe, and try to come to the next meeting on January 20, 2011.

If you need information or support, contact me by Email through the website, or call me by clicking the Call Me button on the blog or in the website. That button will connect you with me anytime, or if I am not available that moment, you will get my voicemail so I can call you back. I can also meet you online for an online meeting if you have a webcam. Just contact me to set up a good time.

See you all in January. Call me anytime you have any questions at all, or when you get ideas for awareness events out chapter can do together.


--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Wednesday, December 15, 2010

December Meeting

Come one, come all, to the December meeting of the Vasculitis Foundation.

The meeting will take place at Deli-Berry on Juan Tabo on Thursday at 6PM. Details and a map can be viewed at www.nmvasculitis.org/home/support/meetings

Brochures will be available for you to take back to your doctors, and we can make a list of awareness ideas for the upcoming year.

We hope to see you there.

We wish you a safe and happy holiday season!

Published with Blogger-droid v1.6.5

Saturday, November 20, 2010

November Meeting Wrap-Up



Vasculitis Foundation in New Mexico
Albuquerque Chapter Meeting
November 18, 2010
Deli-Berry Restaurant

Present:
Joseph C. (CSS family)
Meaghan C. (CSS patient)
Dennis W. (WG patient)
Rupal P. (Family - WG suspected, mother still undiagnosed)
William C. (CSS family by telepresence in Skype)

We met at Deli-Berry. When I arrived, Dennis and Rupal had already introduced themselves and were busily sharing information. Rupal mother is still undiagnosed with a pending Wegeners diagnosis.

I initialized Skype and called William, who had indicated an interest in joining this months meeting. He remained connected throughout the meeting and as the only remote participant, he was able to use video and text chat. With multiple recipients, only voice connections are possible.

Most of the meeting was spent sharing links to sites that are already available on the Education page of www.nmvasculitis.org. We discussed the usefulness of www.uptodate.com, for those who can get access. Recent changes to that site allow for temporary memberships, so it is now affordable to most anyone. Rupal has two family members who are physicians, so she sends them the links for which she wants full text, and they send her the information.

We all shared the names of a few doctors, and a huge oversight was corrected. We learned that NM Arthritis Associates has several rheumatologists on staff who are already familiar with vasculitis. Those names will be added to the list soon. William used to be a board member for the NM Arthritis Foundation, so he and I may have more to talk about in terms of learning from that experience to advance the efforts of this chapter.

You are all encouraged to share the names of your good doctors who know about vasculitis on the Vasculitis Doctors Form. When you do, those names are made available to benefit other patients. If you do, then others will be more likely to also share and you will likewise benefit. So, sharing information is in your best interest.

Joseph discussed that it would be nice if access to full text articles was a membership benefit for paid membership to the Vasculitis Foundation. Then also placing them in an corss-indexed structured, database, like a WIKI. Imagine being able to search through articles on any topic that interested you. Just an idea at this point but leveraging the army of members to find and submit links and articles, then having it peer reviewed to validate the information. What a lofty but also worthwhile goal.

We did Skype at the meeting between about 6PM and 8PM. One person Skyped in and was able to participate more or less fully with the meeting.

I will use that technology again at the next meeting. You may also can find me in Skype from time to time. I am more often online in Google, but have access with Google, AOL, Skype, Yahoo, and even ICQ.

There were five at the meeting, including one remotely. Which was awesome.

Wednesday, November 10, 2010

Our next chapter meeting may be online as well as at Deli-Berry



[To view this video, you have to look at this post online in a web browser. Email probably will not play the video. I have been told the microphone for this webcam (Logitech HD Pro Webcam C910) is very sensitive so if this sounds loud to you, feel free to use the volume control in the video player to adjust it according to your preferences. Also, this video is hosted in my SmugMug account, so if you have a video you would like to 'share with the class', please send it to me and I can host it for you privately.]

I am figuring out some new webcam technology, so I may either record some stuff at the meeting, and then later post it, or if I can get WiFi, the webcam, etc, all working, I may broadcast the meeting itself in Skype, Google Voice, or whatever works.

This technology exists, so it would be silly not to try and use it. At least that is how I see it.

This is great news for Bonnie in Taos, if she can tune in, and Jamie, who lives in Las Vegas, plus a few in Albuquerque who find it hard to come to the meetings in person, but might be able to participate remotely.

The next meeting is on Thursday, November 18th at 6PM. The location for Deli-Berry is 2520 Juan Tabo Blvd NE. On Juan Tabo, just north of Menaul Blvd NE, on the right hand side. You will see the Deli-Berry sign, and it is located in between a Sprint store and FedEx Office.

Most likely, I will try to braodcast the meeting in Skype, so to participate you will need a free account, and possibly a headset and/or a webcam. Once you have a Skype account, send me an Email with your Skype ID and I will send you my Skype ID in reply.

Here is some information about headsets and webcams, assuming you do not already have this equipment already installed on your computer.

If you have a newer MacBook, or pretty much any really new laptop, you may already have a webcam built in. In most cases, Skype will find it and use it automatically. But since I cannot possibly support all of the possible variables, you are going to have to sort that out. You may also find that an external webcam gives you better quality. The MacBooks are pretty good, but all others you will have to try them to find out.

Here is what I know...

For a headset only, you can do much worse than a Logitech ClearChat Comfort USB Headset (Black). Sample prices:

  • $31.99 on Amazon.com
  • $33.44 at Sears
  • $37.88 at Walmart
  • $39.99 at Target

There are other brands, like Plantronics for example, that are also dandy, but I am familiar with Logitech, so that is why I choose mention them. go to a store and compare for yourself. Try them on, and see what fits better for you.

USB connection gives you easy setup and great sound quality. Mostly, you just plug it in and it works. You may need to tell some software which microphone or headset to use, but it is pretty straighforward.

WHY NOT GO ALL THE WAY WITH A WEBCAM?

Or for practically the same money, you can go for the full boat with a web camera.

I am a big advocate for all vasculitis patients to get some kind of camera to record their stories as a way of spreading awareness. Just tell the camera the cleaned up version of what you tell your friends and family. It will go a long way towards making the public more willing to contribute time and money for this worthy cause.

But which camera?

I did a lot of research, and many cameras will work well. I personally like the Logitech cameras, because their is a nice A great compromise between quality and affordable price, plus I like how easy their software was to install.

Prices vary depending on how good you want the camera to be.

For most people I recommend the Logitech C310 HD Webcam. Again, good picture, good sound, and a good price. There are more expensive models, but this one will do the job quite nicely with very few compromises. Sample prices:

  • $39.99 at BestBuy
  • $41.99 at Amazon.com
  • $49.99 at Office Depot
  • $52.98 at Staples

Just as with the headsets, there are other brands that are also good, like Microsoft webcams are pretty good. I just choose to promote Logitech because I am familiar with them, they are easy to set up, and I like the software.

If you want to mimic my research, to see the quality differences, try starting with the webcam reviews at http://cowboyfrank.net/webcams/index.htm

He puts a number of different cameras through their paces. His most recent reviews are dated September 26, 2010, so they are not too old.

After doing the research, I like Logitech best. I chose that to give webcams to my family so we could all be on the same software as well. The Logitech Vid software is pretty nice and makes connecting a snap.

The webcam will work with any application that calls the camera and/or the microphone.

  • Google Voice/Video Chat
  • Skype
  • Logitech Vid software (Free to download and can be used with any webcam.)
  • Microsoft Live
  • Yahoo Messenger
  • etc, etc, etc, yadda yadda yadda

They all pretty much will work with most any USB webcam.

These better Logitech microphones, like on the C310, are noise cancelling, so you can use them to talk to people hands free instead of using a headset. You just turn down the volume enough to stop the feedback, then you can still hear the other party easily, and they can hear you too.

You can turn the camera part on and off as you choose. You get to turn that on and off in the software. Logitech software even has a feature to allow you to put a picture of your chooseing in place of a live camera feed. Handy for those days when you just don't want to be on camera, but still want to talk with people. Or when you want to turn the camera off for a few minutes to do something off camera, but still hear the other persons voice.

These are great tools for keeping people in touch, and at these prices, most people can afford them. In some ways, since the long distance over the Internet is free, you almost cannot afford not to take advantage of this technology to stay in touch with distant friends and relatives.

I am not trying to tell you what to do, but I will encourage you to share what you know.

Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico

Saturday, September 25, 2010

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

Friday, September 24, 2010

Attending Seminar - Advocating for Cancer Patients

I will be going back to school tomorrow as I attend a day long legal seminar on Advocating for Cancer Patients.

Why does this matter?

I figure the same laws that protect cancer patients when they get their treatments, will also apply to cases where vasculitis patients are denied insurance payments for reasons like, "This medication is an investigational or experimental treatment," or "This therapy is not a standard of care." Both reasons can be invalid for denying patient care if the prescribing physician has followed the accepted practices for a vasculitis specialist. Who decides what those standards should be? Is it the insurance companies? No. In the case of orphan diseases, like vasculitis, it is more often the doctors who specialize in treating the condition that collectively determine the appropriate standard of care.

Now tomorrow, I will look to learn how to put some teeth behind that statement. Something they might have to sit up and pay attention to.

As I prepare to learn how to better advocate for my daughter's medical care, I may also pick up a few skills along the way. If you wish to know more, keep an eye on this blog, or consider coming to a monthly meeting. If I  know you are coming, I can prepare a summary presentation on this topic including handouts. RSVP anyone?

Here is the low down on what is going to go down...


Saturday, September 18, 2010

The NMVasculitis blog got a facelift

If you have not been in a while, go check out the new design:

http://nmvasculitis.blogspot.com

Whatcha think?

          Fabulous Darling?
     or
          Fuggedaboutit?

Thursday, September 9, 2010

I need your stories, so I can make money for vasculitis research

If you follow the news for the Central NM Chapter of the Vasculitis Foundation, then you may recall I mentioned back in August that we have a unique fundraising opportunity coming up.

http://nmvasculitis.blogspot.com/2010/08/haley-is-feeling-better-meeting-tonight.html
"AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH
=====================================================
In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations."

With very little commitment and time, I, and one or two of you who may volunteer to go with me, will attend the Kick Off for the 2010 Combined Federal Campaign (CFC). This will give us the chance to personally represent the face of vasculitis to hundreds, or potentially thousands of federal employees who come to the kick off to decide how they are going to allocate their charitable donations. It is a sure winner, but only if we convince them that vasculitis is a cause worthy of their support.


You can help me help you by sharing your words with me. Simply write me a letter detailing your personal vasculitis story. The same story you must have told a thousand times. Tell me how you first knew you were sick, how you were diagnosed, and include some highlights, both good and bad, about that experience. 


If you feel really generous, speak to the donors in your own voice and tell them why you think they should support research into vasculitis. If you optionally choose to share a photo, then I can add that to our display to show them there are real people affected by these terrible conditions.


If you know a friend or family member who has vasculitis, you can tell your version of their story. That will be good to show how vasculitis changes more lives than people realize.


I will read your stories, and without giving away your identity at all, I can use your stories to make sure we have plenty to say about vasculitis patients in New Mexico.


Even a few paragraphs will be very helpful. Do not hesitate, share your story today!


Some of you have told me your stories at a chapter meeting, but I need it in writing so I can get in my head good. That way the stories will be ready when I am standing there asking people to support vasculitis research. I want them to contribute, so that you can someday enjoy improved treatments, and hopefully also a cure.


Please send your stories to Joseph Carpenter by Email, Fax or Postal Mail. By jet plane or slow moving mule train.  I will be doing more of these events, so if you don't get to it now, please get to it eventually. I will speak as the voice for those of you who cannot speak for themselves.


--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Vasculitis Research Money - Where Does It Come From?




Vasculitis Research Money - Where Does It Come From?


We learned at the 2010 Vasculitis Symposium that the Vasculitis Foundation (VF) is the number one private funder of clinical research concerning vasculitis. The VF has collected and spent approximately one million dollars on research for vasculitis. That is a step in the right direction. But like any lucky coin, there are two sides. Before you count your laurels folks, lets take time to look at the flip side.

For example, where is the government funding going? Take a look for yourself:
Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

"This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions."


Look closely. You will not see "Vasculitis" listed on that table.

Crohns Disease gets 58 million. If you have gastrointestinal symptoms, maybe they will learn something that will help you down the road.

Arthritis gets 259 million dollars, and many vasculitis treatments are the so called "red-headed step children" of treatments that were discovered arthritis research. So perhaps that will yield some results that, in a decade or two, maybe, will trickle down as new treatments for vasculitis patients.



Wednesday, September 8, 2010

Antibacterial Products: Can You Be Too Clean?

Here is another article that rang my bell with the flu season coming up.
CVSCaremark Health Resources
"Antibacterial Products: Can You Be Too Clean?
by Elissa Sonnenberg, MSEd
In a world full of runny noses and hacking coughs, products with labels like "antibacterial" and "antimicrobial" regularly dispense hopes of germ and illness-free lives to their users. But, as the variety of germ-fighting products continues to rise, medical experts continue to disagree over their benefits and potential long-term effects."
Click this line to see the full article. (If you are reading this from the mailing list, you will need to go to a browser and read it in the blog. This link is HUGE.

Here are my own two cents on this topic...

My own experience with the, "Can you be too clean?" question came in the early days of Meaghan's diagnosis. I was trying to figure out the exact percentage of her immune compromise, then I was quickly made to understand that there is no way to know that for sure with any precision, and even if you could, it changes depending on other variables. Even without an autoimmune disorder, or taking prescription medications that suppress the immune system, every person is unique. Your "healthy baseline" is going to be different from every other human being.

So, the best advice we got was to follow the best advice we all get for staying healthy:
  • Wash your hands and use antibacterial rinses when you cannot.
  • Stay away from sick people
  • When you get sick, stay home and get better as quickly as possible
  • Lots of rest and fluids, especially water
Patients with autoimmune disorders can take that advice seriously, but come on... really... what is the answer to this how much should I protect myself from germs?

I pressed further and finally got some doctors to admit that in fact, if I protect Meaghan too much, then her natural immune system will suffer. Some researchers have suggested the immune system needs to be provoked in order to stay strong. Basically, if a person is too well protected from germs, and never has the chance to stimulate their immune system with enough crap to keep it worked out and healthy, then they are actually more likely to get sick. [The paraphrasing is my own.]

So what I took away from all that was that we should protect ourselves, but not too much... So it remains a balancing act.


Here is a good definition of "autoimmunity" you can use to describe it to others:


"The immune system can suddenly turn on itself and target its own organs, tissues and cells for destruction: what we call autoimmunity. Most of the more than 70 distinct types of autoimmune diseases are rare, but collectively they affect millions of individuals worldwide." (Editorial: Unraveling Autoimmunity, Nature Immunology 2, 755 (2001) or doi:10.1038/ni0901-755)

You can request this document from a number of document delivery services

  • British Library Document Supply Centre (http://www.bl.uk/services/listings.html)
  • CIST Canadian Institute for Scientific and Technical Information (http://cisti-icist.nrc-cnrc.gc.ca/eng/ibp/cisti/faq/document-delivery/cisti-infotrieve-collaboration.html)
  • Infotrieve (http://www4.infotrieve.com/default.asp)
  • Thomson ISI Document Delivery (http://www.thomsoninnovation.com/ti/workflow/docdelivery/)

You can also request this document from your local library through inter library loan services.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer

Hello Folks,

This is not exactly new news, but I found this article to be more easily understood than most in terms of answering the question, What is the difference between Cyclophosphamide and Rituximab?

Here you go.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer
http://www.sciencedaily.com/releases/2009/10/091018141723.htm
ScienceDaily (2009-10-17) -- Researchers have identified that Rituxan, a drug previously approved for the treatment of non-Hodgkin's B cell lymphoma and rheumatoid arthritis, can treat severe ANCA-associated vasculitis as effectively as cyclophosphamide, the current standard therapy.

Tuesday, September 7, 2010

The Spoon Theory

The woman who wrote this article has Lupus, another autoimmune disorder. The Spoon Theory has made the rounds, so some of you may have heard of it before.

The Spoon Theory written by Christine Miserandino

Right now, Meaghan is seeing the benefits of Rituximab and Azathioprine, (knock on wood) which seems to be allowing her to get her Prednisone down. She is at 10mg and holding for now, pending her next checkup and infusion.

The daily grind with vasculitis puts her, and other patients, in the category of people who can use the Spoon Theory to explain to others just how it is when living with vasculitis. Visual aids included if you have access to spoons!

Remember I cannot publish the entire article, because of copyright, but I encourage you to visit Christine Miserandino's page to read the entire article. You can even download a PDF for printing, or order a poster if it suits you.

Tuesday, August 31, 2010

Women's Chronic Pain More Intense

Women's Chronic Pain More Intense
Men and Women Experience Chronic Pain Differently, but Experts Not Clear on Why

By Kathleen Doheny
WebMD Medical News
Reviewed by Laura J. Martin, MD
Aug. 13, 2010 (San Diego)

"Women's chronic pain is different than men's, and health care providers and therapists need to focus on that, says an expert who talked about those differences at the annual meeting of the American Psychological Association.

''Research has shown that women experience significant pain much more than men," says Jennifer F. Kelly, PhD, an Atlanta psychologist who often treats women who have pain.

Those aren't the only differences, she says. Women also have more recurrent pain compared to men and it's often more intense and long lasting.

''Women are also more likely to experience multiple pain conditions," she says."

To read the rest of this article, visit: https://www.webmdhealth.com/nl/nlv.aspx?id=gbclt_Ukhyk=&s=11294

Friday, August 20, 2010

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.

###

Thursday, August 19, 2010

Haley is feeling better, meeting tonight, event coming

Update on Haley's condition
===========================
I spoke with Haley's father this morning, and she is now free of stroke-like symptoms. She is responsive, mobile and acting like herself.

The family asked me to thank you all for your well wishes. They will be joining our chapter, and perhaps you will meet them at a future event.

The doctors are still figuring out what brought on Haley's sudden onset of non-responsiveness. Her father tells me the doctors are suspecting high blood pressure for these particular symptoms, and looking into what caused it. The long version is there are still mysteries to be solved, and the bottom line is Haley's condition is improved.

Her father is planning to come to the chapter meeting at Deli-Berry tonight to pick up some literature and speak with Meaghan. If any of you can go, I am sure they would welcome any insights into the Wegeners experience.

MEETING TONIGHT
================
I am required elsewhere tonight, so the meeting will be facilitated by my daughter Meaghan, who most of have met at previous meetings.

Deli-Berry (www.deli-berry.com) is located at 2520 Juan Tabo Blvd NE. Just north of Menaul Blvd on the right side of the street. It is right in between to FedEx Office and a new Sprint store. They have some of the best frozen yogurt, and an assortment of healthy menu choices.

Deli-Berry may become a full time Vasculitis supporter!
========================================================
We are also in negotiations with Deli-Berry to set up a permanent awareness and fundraising presence in their restaurant, including a big poster, and a brochure rack on the counter. Those details are still in progress, but your support even now could help make a difference. If you go in there, tell them you read about Deli-Berry on the NMVasculitis website, and encourage the owners to become partners with the Vasculitis Foundation. Make Deli-Berry one of your favorite places to go, and soon you may also be able to support vasculitis research just by eating a sandwich, and a tasty frozen yogurt treat!

AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH
=====================================================
In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations.

The Central & Northern New Mexico CFC serves over 23,000 employees in Bernalillo, Catron, Cibola, Colfax, Curry, De Baca, Guadalupe, Harding, Los Alamos, McKinley, Mora, Quay, Rio Arriba, Roosevelt, Sandoval, San Miguel, Santa Fe, Sierra , Socorro , Taos, Torrance, Union and Valencia Counties.

If you are reading this, let me say thank you to the many generous donors and federal employees who give of their time to conduct the campaign!

The VF was accepted this year to participate in the national campaign for the first time (you have to apply and be approved). The VF got approved for the Kansas City CFC two years ago because our national office is in Kansas City, Missouri. We were then able to leverage that to the national level.

VF Executive Director Joyce Kullman, said this to me, and it will apply to any of you who may choose to volunteer, "I really really appreciate you representing the VF. At the kickoff meetings in KC, we connected with several patients/family members who did NOT know we existed. We handed out brochures with the small labels with our CFC # 64445. It was amazing talking to all the federal employees at the kickoff. The goal is to get the employees to designate the VF for support. It comes directly out of their paycheck so it is very easy."

The federal employees have a special program where they get to choose which charities to donate money to, and the Vasculitis Foundation has arranged to be a part of it nationwide. The New Mexico chapter will go to the picnic to present information and answer questions.

There is only room for about four of us at the table. I am going, and Meaghan will likely also go. I would like to invite one or two of you to join me.

Even if you cannot go to this kickoff, keep this event in mind. If you or someone you know is a federal employee, please encourage them to designate all or a portion of their CFC donation to the Vasculitis Foundation! The VF CFC# is 64445.

Ideally, you would just show up and be prepared to speak about your experience with vasculitis. We will not be "asking for money," as much as simply sharing information persuading people how they can help by contributing funds to vasculitis research. If you are interested, then please contact me so we can talk more about how you can help.

Remember, if you ever miss a meeting, you can arrange to meet me anytime you want to talk. Just call me.

That is it for now. I will touch base with Meaghan tonight, and see if any of you went. It would really warm my heart if you do manage to go.

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Tuesday, August 17, 2010

Healthy Sleep Tips | National Sleep Foundation - Information on Sleep Health and Safety

Healthy Sleep Tips | National Sleep Foundation - Information on Sleep Health and Safety

"The following ten tips can help you achieve sleep and the benefits it provides. These tips are intended for "typical" adults, but not necessarily for children or persons experiencing medical problems.

Finally, if you have trouble falling asleep, maintaining sleep, awaken earlier than you wish, feel unrefreshed after sleep or suffer from excessive sleepiness during the day or when you wish to be alert, you should also consult your physician. Be sure to tell him/her if you have already tried these tips and for how long. To check for possible sleep problems, go to our checklist, "How's Your Sleep?""

Despite the "medical problems" disclaimer, sleep affects us in many ways, and is key to successful stress management. Both mentally and physically, both vasculitis patients and the caregivers who support them will do better if they know about ways to improve their sleep habits.

There are other articles that discuss how to maximize the potential of a power nap, to offset interrupted nighttime sleep patterns. Check it out.

Monday, August 16, 2010

Prayer request for Haley

Call it prayer, or call it well wishes if you like. Call it sending positive energy, or depending on your faith, do whatever works for you.

I became aware of a new patient today. While we are always responsive to new patients and get them as much information as possible, most often I am contacted by adult patients who are already stable.

In this case, a ten year old girl is in the hospital with Wegeners Granulomatosis. She was diagnosed almost one month ago. She has kidney involvement, and she just had a stroke that affected her brain. Her aunt who called me, tells me the next 72 hours are key for her.

She is seeing the rheumatologist I might recommend to her, who is Courtney Johnson at UNM Children's Hospital.

Her current condition is critical. So, I am doing something I do not always do... I am asking you all to pray for Haley. I have not yet spoken to her parents, so am not at liberty to discuss her full name or details at this time.

However, I feel compelled to ask you to send out whatever positive thoughts you can to a young girl named Haley in hopes that she will pull through this stroke. If you wish to document your well wishes, comment or reply to this blog entry, and I will make sure your words get to the family.

Remember also that we have a chapter meeting on Thursday. It is possible Haley's aunt may be there. If you think you might have something to offer this family by way of support, please consider coming to that meeting. Let me know if you plan to go.

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Thursday, August 12, 2010

1999 Overview of vasculitis diagnosis by AAP

http://www.aafp.org/afp/991001ap/1421.html

This article is dated by a decade, so the treatment protocols will need to be updated. However, the text remains a good overview for the general medical professional who needs to make the diagnosis.

It is also, in my opinion, a useful overview for the patient who is still in the "mystery diagnosis" phase of the vasculitis experience. Feel free to print this and share it withe your primary care physician, or specialist. Especially if any of the symptoms mentioned here seem familiar to your condition.

As always, DO NOT DIAGNOSE YOURSELF. A proper diagnosis requires the experience and training of a medical doctor with the resources for proper medical tests to identify these medical symptoms.

Published with Blogger-droid v1.5.1

Wednesday, August 4, 2010

Rheumatology Article Aggregator

An aggregator collects information from multiple sources and presents it in a unified way. This tool collects medical articles from different sources, and presents them under their category. E.g. Rheumatology, Pulmonology, etc.

This website was suggested to me by Suzanne DePaolis, a vasculitis patient who finds it useful for helping her keep up with all the medical news related to her condition.

Perhaps you will also find it useful. Here you go.

Rheumatology - MDLinx - Rheumatology Journals, Rheumatology Research Articles
http://www.mdlinx.com/rheumatology/

Tuesday, August 3, 2010

Awareness Idea: Gift cards

What if every vasculitis advocate (patient, family, caregivers, friends) carried with them a booklet with half off coupons for some national chain, like Target, or Subway, or whomever the partnership can be set up with.

Then when they have the vasculitis talk with some new person, they have an immediate way to raise funds for vasculitis with them, right there on the spot.

Ideally, these coupons require someone to put their name and contact information so we can send them more information about vasculitis later as a follow up. But the coupon itself is immediately redeemable, so there is an immediately useful reason for them to buy the coupons.

The advocate submits the money as a donation to the VF, and collectively we might be able to raise an additional several thousand dollars.

I need to share this idea with Bob Sahs, the new Vasculitis Foundation Board President.

I will get back to you guys if this pans out.

-- 

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Thursday, July 29, 2010

Hello from Long Beach!

At least two of us from New Mexico are here in Long Beach California to attend the 2010 All-Star Vasculitis Patient Symposium.

They say a picture is worth a thousand words, so I recorded a short intro video. If that works out, I may post more videos.



We will bring back some new information with us. You can expect to see that at future monthly meetings of the NM Chapter of the Vasculitis Foundation.

More later,

Joseph Carpenter

Tuesday, July 13, 2010

New Caregivers Online Group Forming

This new group will initially be Email based, with some tentative plans for a secure forum archive later. This is in the works, and will be available soon. Tell your spouses, boyfriends, girlfriends, adult children, and whomever has been helping you keep track of your medications... Their voice will be heard.

You have seen the online groups for patients, like Vasculitis Survivors, and CSSISG, and Saavy, which are also visited by caregivers. No reason to stop participating in those places. But some issues are specific to caregivers and caregivers are supposed to be strong and not unload on the patients, right? Well, at least there are some thoughts and feeling we deal with they are better of not knowing.

We caregivers have our own special needs that require care and feeding, or chicken soup for the soul, or sometimes just a compassionate ear attached to someone who understands.

Soon, Autoimmune Vasculitis Caregivers will have a place to call their own. A place to laugh, cry, and lift each other up... virtually... and if kind words mean anything, literally too.

When it is up and running, caregivers can look forward to more posts like this one:

Caregiver depression: Prevention counts
Caregiver depression — Find out how to prevent and cope with caregiver depression.
http://www.mayoclinic.com/health/caregiver-depression/MY01264


For the latest health information, sign up for Housecall, Mayo Clinic's free weekly e-newsletter.
Sign up for Housecall


Stay tuned. NMVasculitis.org will announce it when it arrives.


: Joseph

Update: The group I just mentioned has been created. Caregivers can find it here:

Autoimmune Vasculitis Caregivers
http://groups.google.com/group/vasculitis-caregivers

Second Update:

The powers that be are discussing the specifics of how to set up this forum. It is live and will go online for general use, but not yet. When all the questions have been answered, I will post an update.

Monday, July 12, 2010

Public Transport options in Long Beach CA

I realize not everyone is going to be able to attend the symposium, but I will be sharing links to this with other people, so bear with me here.

If you are going to Long Beach CA at the end of the month, you would want to know how to get around. Here are some public transport options to get you all around the town:


Getting Around

Long Beach Transit
Long Beach Transit operates a Transit Information Center at 130 E. 1st Street, Southeast corner of 1st Street & Pine Avenue in the Long Beach Transit Mall.

http://www.lbtransit.com/services/passport.aspx

Telephone Information
Your friendly Transit Advisors are only a phone call away. Call Monday - Friday, 7AM to 6PM, and Saturday, 8AM to 3PM. We are close on holidays. Telephone information offers you:

Transit trip planning
Customer relations
Long Beach Transit Main Office
The administration office is located at 1963 E. Anaheim Street in central Long Beach. Telephone number: (562) 591-8753. Office hours are 8 a.m. to 5 p.m. Monday through Friday.

Operator Assistance
562-591-2301
Monday-Friday
7 a.m. to 6 p.m.
Saturday-Sunday
9 a.m. to 6 p.m.
Closed on Sundays & Holidays




Dial-A-Lift
Long Beach Dial-A-Lift is a curb-to-curb, shared ride transit service exclusively for the mobility impaired residing in and travelling throughout the cities of Long Beach, Lakewood and Signal Hill.

Who is Eligible for Dial-A-Lift Membership?
Residents of Long Beach, Lakewood or Signal Hill, who are at least 18 years of age, permanently mobility impaired and unable to board or access the Long Beach Transit fixed route bus system are eligible to apply for Dial-A-Lift membership. Persons must be able to wait at a curb up to 30 minutes. Gurney or door-to-door services are not provided by Dial-A-Lift.

More information:
http://www.lbtransit.com/Services/Dial-A-Lift.aspx

Call 562-591-8753 for your Dial-A-Lift Application

Tuesday, July 6, 2010

Reminder: NMVasculitis Chapter Meeting on July 15th at 6PM

We will once again go to The Range Cafe:

The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

For more information about this location, see the Meeting page of the chapter website:


This will be our final meeting before Meaghan and I travel to Long Beach, CA at the end of the month to attend the 2010 All Star Vasculitis Patient and Physician Symposium. Huge amounts of knowledge are available at this event from physicians, patients, and caregivers. If you really want to get a handle on your condition, this is one of the best ways to make that happen.

I extend a special invitation to any one who also plans to attend this conference. We could all meet for lunch, or at least we should be able to recognize each other while we are there. I will be the very tall guy handing out NM Chapter brochures and taking lots of notes! :o)

Or, you can come to our monthly meetings and propose a list of questions. I will write them down and try to get you some answers. If you cannot come to a meeting, send your questions to me via Email or post them to the group via our Google Groups list. Putting your questions out there is the first thing you can do to seek an answer.

Hope to see you at the next meeting!

Joseph Carpenter
NM Chapter Leader and chief dishwasher.

Tuesday, June 29, 2010

Still time to make plans to attend 2010 Vasculitis Patient Symposium

http://www.vasculitisfoundation.org/2010vasculitis-symposium

Symposium Logo
 
First Time in Western USA, Leading Vasculitis Experts and Patients to Assemble for Vasculitis Foundation Symposium
 
All Star Vasculitis Symposium, in Long Beach, California
 
July 30 - August 1, 2010
 
 Register Today!
 
 Excellent Opportunity to Learn About the Latest Research Findings and Treatment Recommendations for Over 15 Forms of Vasculitis
 
I attended vasculitis symposiums in Cleveland and Baltimore. I found them both to be very organized, educational, and informative. Seeing so many volunteers and doctors give so much of their time, made it very gratifying for me. I understood that a lot of people care and I am not alone in my vasculitis journey. -- Mercy LaVilla, diagnosed with PAN in 1999, remission in 2005
 
Wealth of Knowledge in One Place
 
The All Star Vasculitis Symposium will be held July 30 - August 1, 2010 at the beautiful Westin Long Beach Hotel in Long Beach, California. This is the first Vasculitis Foundation symposium held in the western USA. 
 

Five Reasons to Attend
 
1. Benefit from the knowledge and experiences of attendees at the world's largest meeting of vasculitis patients, family members and medical experts

2. Expand your disease knowledge by learning about treatment advances, research, quality-of-life issues, and integrative medicine 
 
3. Connect with other vasculitis patients and families for fun and fellowship

4. More than 35 sessions covering all 15 forms of vasculitis, presented by world-renowned experts

5. Network opportunities bring hope, encouragement, and empowerment

Still Not Convinced? 
See the list below of presentations and speakers scheduled to date.
 

General Sessions 

Vasculitis 101 - Overview of Vasculitis and the Individual Diseases
Introduction:  Vasculitis, a family of diseases, how do they relate to each other? Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Churg Strauss Syndrome, Microscopic Polyangiitis, Wegener's granulomatosis 
Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic
Instituto Nacional de Enfermedades Respiratorias


Giant cell (Temporal) Arteritis, Polymyalgia Rheumatica, Takayasu's Arteritis, Central nervous System Vasculitis
Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University

Cryoglobulinemia, Henoch-Schönlein purpura, Polyarteritis nodosa, Secondary VasculitidesPhilip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center

Ask the Experts Q&A Panel
Drs. Merkel, Flores-Suárez, Weyand and Seo
  
Vasculitis and Our Pediatric Patients and Their Parents 
Join parents and young patients as our pediatric vasculitis experts discuss the management and most current treatment options for younger patients. Attendees will be able to ask questions, meet other parents/patients, share experiences, concerns, and what works for them.
Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center 
New and Emerging Therapies in Vasculitis
Welcome and Introductions

Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Understanding Immunology for the Patient with Vasculitis
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine

What's Happening Now in Vasculitis Clinical Research:  The Vasculitis Research Clinical Research Consortium (VCRC), the European Vasculitis Study Group (EUVAS) and other Vasculitis Research Programs 
Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine 
Recently Completed Clinical Trials in Vasculitis and Implications for all Patients: 
Rituximab (RAVE Trial results)
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
 
Other Therapeutic Advances 
Carol A. Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research  
Ask the Experts Q & A Panel
Drs. Langford, Merkel, Monach and Specks

Small Vessel Vasculitis
For attendees interested in Wegener's granulomatosis, microscopic polyangiitis, Churg Strauss syndrome, relapsing polychondritis, Henoch-Schönlein purpura, polyarteritis nodosa, cryoglobulinemia, vasculitis associated with connective tissue diseases), central nervous vasculitis, Behcet's disease, and other small vessel diseases.

Standard of Care Therapy for Small Vessel Vasculitides
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine 

Dealing with the Chronic Medical Effects of Small Vessel Vasculitides 
Philip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center 
Ask the Experts Q & A Panel Drs. Seo and Monach
Large Vessel Vasculitis For attendees interested in Takayasu's arteritis and Giant cell arteritis (Temporal arteritis)

Standard of Care Therapy for Large Vessel Vasculitides 
Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University 
Dealing with the Chronic Medical Effects of Large Vessel Vasculitides
Curry Koening, MD, MS, Division of Rheumatology, University of Utah

Ask the Experts Q & A Panel Drs. Weyand and Koening

Breakout Sessions Ear/Nose/Throat in Vasculitis 
Robert S. Lebovics, MD, F.A.C.S., Otolaryngology/Head & Neck Surgery, New York City, New York
Matthew L. Finerman, MD, Otosurgical Group, Medical Clinic, UCLA
 
Family, Friends and Caregivers Support Meeting (please, no patients) 
Donna Benton and Claudia Ellano-Ota, LCSW
Orange Caregiver Resource Center, California, St. Jude Brain Injury Network


Gastrointestinal Issues in Vasculitis 
Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic, Rochester, Minnesota 
Kidneys in Vasculitis 
Patrick Nachman, MD, University of North Carolina Kidney Center, Chapel Hill, North Carolina
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA 

Pharmacology 
Christine Vu, Pharm.D, Department of Pharmacy Services, Cedars-Sinai Medical Center 
Assembling Your Medical Records/Seeking a Second Opinion 
Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research 
Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
Vasculitis Spanish Language Session 
Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic, Instituto Nacional de Enfermedades Respiratorias 
Building a Team:  Patient and Physician Communication 
Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Grace Eisen, RN, Lake City, Michigan, VF Board of Directors 
Eyes in Vasculitis (inflammatory eye disease, low vision, cataracts, glaucoma, eye health)James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic 
Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) 
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic 
Stress Management: Coping Skills and Strategies 
Lisa Graziano, MA, Executive Director, Prader-Willi California Foundation
Understanding Lab Tests for Patients with Vasculitis 
Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill 
Reproductive Health Issues for Women and Men with Vasculitis: Fertility and Pregnancy 
Megan Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Getting Involved in Vasculitis Patient Advocacy 
Jane Dion, Founder and President, Churg Strauss Syndrome Association
Cassie Keane, President, Vasculitis Foundation Board of Directors
Cindy Webber, Co-Chair, Education and Awareness Council
 
Peripheral Neuropathy Associated with VasculitisAnnabel Wang, MD, Neurology, Neuromuscular Disorders, University of California - Irvine
 
Vasculitis Medication Review (dosing/toxicities)Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic Vasculitis: Possible mechanisms. Role of autoimmunityNabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and Allergy
Disability and Workplace Issues for Vasculitis Patients
TaMiko Crockett, Public Affairs Specialist, Tri Counties Area, Social Security Administration
Essie Landry, Public Affairs Specialist, Tri Counties Area, Social Security Administration

 
Group Discussions With Faculty 
Behcet's Disease, Henoch-Schönlein purpura, Kawasaki Disease 
Curry Koening, MD, MS, Division of Rheumatology, University of Utah
Philip Seo,
MD, Co-Director, The Johns Hopkins Vasculitis Center
 
Churg Strauss syndrome
Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic 
 
 
Giant cell arteritis (Temporal arteritis)/Takayasu's Arteritis Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of
Medicine
Cornelia Weyand, MD, Ph.D, Immunology and Rheumatology, Stanford University 

Microscopic polyangiitis
Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill 

Pediatrics Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center 

Polyarteritis nodosa/Cryoglobulinemia Eric Hoy, Ph.D, MS, Department of Medical Laboratory Sciences, The University of Texas
Southwestern Medical Center
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA 

Wegener's granulomatosis
Nabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and Allergy
James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic
Robert S. Lebovics, MD, Otolaryngology/Head & Neck Surgery, St. Roosevelt Hospital
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine 

 
 
And That's Not All!
Keynote Address: Vasculitis - Where We've Been, Where We're Headed Gary S. Hoffman, MD, MS, Director of Senior Staff Matters, Professional Staff Affairs Office, Cleveland Clinic 
 
Disease-Specific Round Table Discussion Sessions 
Moderators: VF Education and Awareness Council 
 
Young Adults Icebreaker (ages 16-25, patients only) 
Moderator:  Kim Golbuff, MBA
Motivational Presentation: Don't Stop Short of YOUR Miracle
Julie Garton-Good, DREI, C-CREC, Port Saint Lucie, Florida
 
Disease Group Dinners
To be announced 
 
 
Have Some Fun! 
 
All Star Recognition, Celebration Banquet and Hollywood Walk of Fame! Tonight we're putting on sequins, tiaras, glitter and glitz and celebrating! Join us on the VF red carpet for an evening of food, fun and entertainment. Participate in the costume contest and win a prize. Experience the paparazzi and adoring fans. Come as your favorite movie or TV star or TV doctor!  (Participation is completely voluntary! Come to have fun.)  
Long Beach and Southern California Attractions 
Over 100 area restaurants. Attractions include the Aquarium of the Pacific, the Queen Mary, Disneyland, Knotts Berry Farm, and Los Angeles. Plan some vacation fun while you are here.
 
 
Learn More and Register 
 
Please go to http://www.vasculitisfoundation.org/2010vasculitis-symposium for detailed information and to register. Seating is limited, please register as soon as possible. Registration fee includes Saturday and Sunday continental breakfast and lunch, Friday night dessert reception, Saturday night banquet, and daily refreshment breaks.