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

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