News Flash! Chapter Leader is Now an Area Contact

FINAL MEETING
The final meeting scheduled for 2012 is tomorrow, December 8th, at Deli-berry. I will be there tomorrow at 3PM. Come join me for a chat over a cup of coffee and I will tell you what's new.

The big news is this is the LAST regular meeting of the Central New Mexico Chapter of the Vasculitis Foundation. No more monthly meetings, and no immediate plans to replace them. 

I HAVE BEEN BUSY IN OTHER WAYS
Even though you may not have seen much of me this past year, I also work closely with the Vasculitis Foundation main office. Over the past year I have spearheaded and or collaborated on several projects, including the YouTube Education Channel, the YouTube Awareness Channel, and I have helped develop the newest updates to the Vasculitis Foundation website. That project is still in progress and the first phase will be launched sometime very soon. Watch out for an official announcement from the VF main office.

So many of you have been great to meet, and at various meetings I enjoyed getting to know you a little better, swapping stories, and sharing information. But our chapter is small, and our geography is vast. When compared to some smaller states, we cover a lot more ground. Also, many meetings I would arrive to find the table empty. I know it is hard for you to get to a meeting when you have to measure every ounce of energy you can spend in a day, so it is also out of compassion for that that I agreed to alter the status of our New Mexico chapter.

CHAPTER LEADER BECOMES AREA CONTACT
When the Vasculitis Foundation announced that they were planning to convert smaller "chapters" to "area contacts" I got on board right away. I figure it will not change too much what I am already doing to forward the missions of the Vasculitis Foundation, and I am and will remain, available to any of you should you need additional information.

WHATS NEXT?
Perhaps ironically, this change in status makes me consider doing more when Vasculitis Awareness Month rolls around in the Spring.

I am also working on a deal where I may be able to set up a Skype meeting with some of the big name doctors in Vasculitis Research to a location here in New Mexico. Not quite a symposium, but very much like having them here. If it works out, it would be like attending one symposium session, then you would be able to ask the doctor questions interactively after their talk. There are many details that go into arranging something like this, but New Mexico could be chosen for the pilot project. Please let me know if you would be interested in attending such an event.

Finally, you may see an Email from me inviting you to simply join me at the movies, or go out to dinner. Just to get together with some Vasculitis Friends and share some good times together.

Rest assured, I remain dedicated to supporting the Vasculitis Patients of New Mexico, and in one way or another will continue the missions of the Vasculitis Foundation as we come up with more ways to bring you more and better information about your condition, and perhaps help make your lives a little better in some small ways.

I will also keep this blog and the NMVasculitis.org website. I may even make some time to update the content more often. if you have news or good information to share, please pass it on through me. I have access to pass it to both New Mexico audience and also the the International audience via the main office.

CAN WE TALK?
Yes! If you still want a face to face, remember you can call me anytime, and I will meet you any time that is mutually convenient.

Yours,

Joseph W. Carpenter
Area Contact for the Central New Mexico Area
(presently includes all of New Mexico)

Attend the 2012 Vasculitis Symposium Webinar

 

Attend the 2012 Vasculitis Symposium Webinar  Knowledge. Community. Power. Saturday, April 21, 2012 I am pleased to invite you to attend the 2012 Vasculitis Symposium via webinar.   The webinar will offer some of the sessions from the 2012 Vasculitis Symposium. Please note, you will need to register for each session you want to attend. MORNING SESSION:  8:30 a.m. - 10:00 a.m. CDT  Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/694259583 What Is The "State of the Art" for Treatment of Vasculitis?  Peter A. Merkel, MD, MPH  Division of Rheumatology, University of Pennsylvania  What Does The Future Hold That Is Even Better?  Gary S. Hoffman, MD, MS, Center for Vasculitis Care and Research, Cleveland Clinic  The VCRC Vasculitis Illness Perception (VIP) Study: Illness Perception,  Fatigue, and Function in Systemic Vasculitis  Peter C. Grayson, MD, Boston University Vasculitis Center Title: Morning Session Date: Saturday, April 21, 2012 Time: 8:30 AM - 10:00 AM CDT MORNING BREAKOUT SESSION:  10:30 a.m. - 12:00 p.m. CDT We are offering three breakout sessions. Please choose one session to attend. Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/298475287 Dr. Phillip Seo, The Johns Hopkins Vasculitis Center, and Professor Wolfgang Gross, University of Luebeck, Clinic for Rheumatology, provide an overview of Vasculitis in general, including understanding treatments, tests and procedures, and medications and side effects. Title: Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1B: Small Vessel Vasculitis Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/315413312 Small Vessel Vasculitis [Churg Strauss syndrome, Granulomatosis with polyangiitis (Wegener's) and Microscopic polyangiitis] Title: Breakout Session 1B: Small Vessel Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1C: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/817031297 Dr. Kenneth J. Warrington of the Mayo Clinic discusses Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis. Title: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/942372952 Dr. Antoine G. Sreih of the Rush University Vasculitis Clinic and Dr. Curry L. Koening of the University of Utah discuss Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis). Title: Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT AFTERNOON SESSION:  12:45 p.m. - 1:45 p.m. CDT Afternoon Session: What is remission? Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/153226191 Hear Dr. Carol A. Langford of the Center for Vasculitis Care and Research discuss what remission means to a vasculitis patient. Title: Afternoon Session: What is remission? Date: Saturday, April 21, 2012 Time: 12:45 PM - 1:45 PM CDT AFTERNOON BREAKOUT SESSION:  2:00 p.m. - 3:00 p.m. Breakout Session 2A: Vasculitis Fall-out   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/988828185 Dr. Philip Seo of the Johns Hopkins Vasculitis Center explains the fall-out associated with symptoms and treatment of vasculitis. Title: Breakout Session 2A: Vasculitis Fall-out Date: Saturday, April 21, 2012 Time: 2:00 PM - 3:00 PM CDT We hope you will be able to join us. Sincerely, Joyce A. Kullman Executive Director

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.

Recycle Old Electronics and Make Money for Vasculitis

Here is a no brainer. One, we all have those old electronic devices we never quite know what to do with when we no long need them. Two, we should always be on the lookout for ways to make money for vasculitis research. Here is an easy way to do both...

Collect Old Wireless Cell Phones, PDA's, iPods or Digital Cameras, then send them to Recycling for Charities using the Vasculitis Foundation link shown below.

Depending on the model and condition of each item they will donate a % of market value for every item to be refurbished, and a flat donation amount for every item that is recycled.

Those who wish to make a charity phone donation can initiate the process by simply collecting any sort of unused cellular phone, PDA, Palm Pilots, digital cameras or iPods. If you know many people who would like to donate their electronic devices, take recycling a step further by organizing fundraising recycling drive or corporate event. The more people that donate old cell phones, the more the environment and local charities can benefit.

Start here:

Recycling for Charities - Vasculitis Foundation
http://www.recyclingforcharities.com/charities/vasculitis-foundation-115.html

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...

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)

http://report.nih.gov/rcdc/categories/default.aspx

"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.

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.

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

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

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/

Still time to make plans to attend 2010 Vasculitis Patient Symposium

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

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 PatientsTaMiko 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 AllergyJames 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.