Friday, December 7, 2012
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.
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.
Joseph W. Carpenter
Area Contact for the Central New Mexico Area
(presently includes all of New Mexico)
Thursday, July 19, 2012
Meaghan and I are on our way now to Atlanta to attend the Vasculitis Patient Symposium. Lots to learn, and we look forward to touching base with other patients and caregivers.
Attending a Vasculitis Foundation symposium presents a rare opportunity to swap stories and compare notes with other people who truly know what it means to live with vasculitis.
Plus we get to attend presentations by some of the doctors who are leading the way in vasculitis research. They often present information as much as a year or more before it os published in medical journals. Another reason to go.
Symposia are held every other year, so we save up our reward miles so we can go.
If you have ever felt alone with your condition, consider attending a symposium. Meeting hundreds of other people who know vasculitis will change your perspective.
If you want to take it one step farther, get involved and volunteer. Taking control of things like promoting awareness can actually help you feel better.
Wishing you all well, and I truly mean that,
Saturday, July 14, 2012
I have been travelling and to make up for lost time, I have to attend to a client today.
As a consolation prize, I have made arrangements for any chapter members who do show up to get either a free small yogurt, or a drink. Your preference. Just tell them at the counter you are there for the vasculitis meeting and I will settle up with them later.
Thank you for your understanding,
Looking forward, we will be attending the 2012 Symposium in Atlanta. It was a hard push, but we managed to scrape up enough reward miles to go. If you are also going, please let me know so I know to look out for you in Atlanta!
More information and registration here:
If you have never been to a symposium, you should consider attending if you can possibly make it.
The medical instruction is excellent, as evidenced by educational videos posted on the Vasculitis Foundation Education Channel on YouTube:
That collection continues to grow, so keep checking back. In fact, I have three new ones from Cleveland Clinic to post now. I had better make some time to get that done!
In addition to the education aspect, there is no substitute for the kind of support you get when you can meet other patients who have your condition. Even though these conditions are very rare, you might meet a dozen or more people who have your symptoms. You can compare notes on treatment and how you have been handling your condition. That feeling you get of "not being alone" is priceless.
Monday, June 4, 2012
Are you going to Atlanta in July?More information about that event can be found here:
Let me know if you are going, and I will look for you there. Perhaps we can sit together at one of the functions.
Meaghan and I saved up reward miles, and it turns out we will be going after all, even though I still prefer the longer symposium format.
FYI for those who need to know... I recently wrote up some information about how to get from the airport to the hotel. It is now included as a link on the event page on the VF website, and you may have seen this show up on Facebook:
Public Transit options for 2012 Atlanta Symposium for those who want to know their options. http://goo.gl/JxZLR. Includes info for taxi, shuttle, trains and buses from most expensive to least expensive. Did you know you can take the train and a bus and will walk less than 5 minutes for $2.50?
Are you coming to the chapter meeting
this coming Saturday, June 9th at 3PM?
Monday, May 7, 2012
Monday, April 30, 2012
What can you do?CAN you talk? Then tell everyone you meet about the Vasculitis Foundation. What it is, what they do, and why they should contribute.
CAN you walk, roll, hop, or crawl? Get your own Vasculitis Foundation T-Shirt and wear it proudly anytime you are out and about. When people ask you what it is, tell them. If you attend a fun run, wear your Vasculitis Foundation gear instead of their T-Shirt. You can wear that later. When people ask you why, tell them.
CAN you drive? Consider putting a Vasculitis Foundation bumper sticker on your car. Spread awareness while driving around town. Give them to your friends and family as well.
CAN you involve friends and family? When they ask if there is anything they can do, and you usually say no... stop telling them no. Instead tell them to consider making a contribution by becoming a member of the Vasculitis Foundation, then donate, volunteer, and advocate for vasculitis patients every day.
You CAN tell people about vasculitis. The power of one voice is stronger than you may know. Tell people about vasculitis everywhere you go. Get some brochures from your chapter leader and pass them out at your doctors office, and give them to people you meet. You tell one person, then they mention it to others, and awareness spreads like a virus. Together, we can make a difference.
You can get your Vasculitis Foundation Official T-Shirts, bumper stickers, and other gear from the VF Store: https://contribute.vasculitisfoundation.org/store
May Chapter Meeting Coming Up on May 12, 2012This is Vasculitis Awareness Month. What to talk about it? Why not show your awareness by coming to a chapter meeting!
Every second Saturday at 3PM we meet at:
Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque, NM. MAP
For more information:Contact your chapter leader, Joseph Carpenter. He really would like to hear from you anyway. Awareness is better when shared.
Send Joseph Email
or use the Call Me widget in the chapter blog:
Additional Educational links and resources available at:
(Moving soon - to be incorporated into http://www.vasculitisfoundation.org/
Tuesday, April 17, 2012