Vasculitis Awareness Week Handbook

You can get involved right away. Do not wait, do not pass go, you sure are not going to get $200. Still, I encourage you all to consider the things you can do right now to spread the awareness of vasculitis. By doing something large or small, your action will increase the likelihood that research will be funded, and this family of diseases will see improved treatments and maybe one day, a cure!

: Joseph Carpenter

Download the Vasculitis Awareness Week Handbook and Begin Planning Now! | Vasculitis Foundation

Mark your calendars for Vasculitis Awareness Week, which will be held September 21-27. Start planning your advocacy and fundraising efforts now!

Vasculitis Awareness Week is the VF’s single largest annual effort at raising awareness. And we need your help to make it successful. Write a letter to your congress person; plan a walk; ask your city government to publicly acknowledge Vasculitis Awareness Week; send an email to your friends and family and ask them to contribute to your efforts; take brochures to your local doctors and ask them to display them in their offices. There are many different activities that you can plan that will help raise awareness and much-needed funds. http://www.vasculitisfoundation.org/awarenessweekbooklet2008

Getting information about drugs, supplements, and complementary medicines

To get a good first look at your medications, first check the Medline Plus database:

MedlinePlus: Drugs & Supplements

http://www.nlm.nih.gov/medlineplus/druginformation.html

At the 2008 Vasculitis Conference, there was a seminar titled Complementary Medicine and the Vasculitis Patient. During that seminar, Dr. Brent A. Bauer, MD shared with us a list of resources for checking out complementary therapies. Dr. Bauer is the director of the Complementary and Integrative Medicine Program at the Mayo Clinic.

I will try to retype the entire list at some point, but for now the number one recommendation on his list of must see websites for valid information about natural medicines is this one:

Natural Medicines Comprehensive Database: Scientific Gold Standard for Evidence-Based, Clinical Information on Natural Medicines

http://www.naturaldatabase.com/

WebMD Physician Directory – Find a Doctor in Your Area

In preparation for Vasculitis Awareness Week in September, I am compiling a list of specialists who may need to know about our chapter, and about the VF in general.

Here is an online national directory of physicians in many areas of expertise. They are not presented with any sort of recommendation, and the list is not necessarily comprehensive. Use this search tool at your own discretion.

It is nice to be able to look up a list of available doctors for when you need a new doctor, or a second opinion, etc. I also see this as potentially useful when planning travel plans. It cannot hurt to know where the specialists are when you travel to a new area.

WebMD Physician Directory – Find a Doctor in Your Area

http://doctor.webmd.com/physician_finder/home.aspx?sponsor=medscape

Photo Collage from 2008 VF Symposium

In June 2008, Karla Kollasch and Meaghan Carpenter were among those who attended the 2008 8th International Vasculitis Symposium in Rochester, Minnesota. Hosted by the Mayo Clinic, this was a tremendous opportunity to learn more about vasculitis research and treatments. It was also a great place to meet others who share the unique burden of these rare conditions.

Here is a photo collage video made from photos taken by Jane Dion and others. Jane is the founder of the Churg-Strauss Syndrome Association (CSSA).

Welcome to the VF Central NM Chapter

I wish to welcome new visitors to the online home for the Central NM Chapter of the Vasculitis Foundation.

This new chapter was founded conceptually by Karla Kollach and Joseph Carpenter after attending the 2008 International Vasculitis Patient Symposium at the Mayo Clinic in Rochester, MN.

We are planning our first chapter meeting now and it looks like Thursday, August 28, 2008 will be the day to put on your calendar. If that changes, then either Karla or Joseph will update this site. Look for a calendar to appear soon that will announce upcoming events.

Because we are new to this and just getting started, we ask that you share your ideas for this new chapter. What would you like to see happen with this effort?

To begin with, we will try to build support groups for vasculitis in general and also for the particular needs of each diagnosis. More about that later.

Within the context of the parent organization, Vasculitis Foundation (www.vasculitisfoundation.org), this chapter will act as an extension to provide information to patients and physicians in NM. We may also grow into sponsoring local events to promote awareness of vasculitis and even raise funds for vasculitis research and treatment. Like I said, we are just getting started so it all starts with hello.

Come join us on August 28th. If you are intersted in attending that event, send mail to Karla Kollach or Joseph Carpenter.

Thank you and welcome!

Joseph Carpenter
Central NM VF Chapter founding member
Parent, daughter with Churg-Strauss (DX March '08)

You may be interested in this organization if you or a loved one have been diagnosed with one or more of the following conditions:

Behcet's Disease
Buerger’s Disease
Central Nervous System
Churg Strauss Syndrome
Cryoglobulinemia
Giant Cell Arteritis
Henoch-Schönlein Purpura
Hypersensitivity Vasculitis
Kawasaki Disease
Microscopic Polyangiitis
Polyarteritis Nodosa
Polymyalgia Rheumatica
Rheumatoid Vasculitis
Takayasu’s Arteritis
Wegener’s Granulomatosis