18:00 Thursday, October 15, 2009
This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/
In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)
RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November
Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.
That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.
If you get a second copy, just know I am also sharing it with others.
WHERE WOULD YOU LIKE TO GO NEXT MONTH?
If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.
**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**
and have a luau on a moonlit beach at night... OOoo**
What? Huh? Did you say something? :o)
HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)
Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu
I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu
Are you drooling yet? I nearly was after we ordered.
MOBILIZING THE STUDENT BODY
Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.
I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.
If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.
HALLOWEEN IDEA
Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.
WISH YOU WERE HERE
This meeting was more like a dinner, but we did discuss awareness ideas.
We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.
In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.
I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.
I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.
RECRUITING FAMILY & FRIENDS
Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.
Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.
The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.
Though rare, there are others out there with vasculitis, and they do not congregate naturally.
Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.
As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.
HEY, WHAT ABOUT THAT GOOGLE GROUP?
I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.
Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.
I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.
with monthly chapter updates. Send me Email!
or I can quote you anonymously.
Just please let us know how you are doing.
MOVING THE MEETINGS
Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.
For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.
We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu
This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.
People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.
with my innate charm and Meaghan with her good looks.
When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.
GETTING ATTENTION
We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]
The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.
T-SHIRTS FOR AWARENESS IDEAS
Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.
This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.
I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.
In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.
Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.
Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?
Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?
SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY
Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?
Whois contact data:TWITTER IS COMING SOON TO A WEB SITE NEAR YOU
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no
I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?
I am reminding myself now to update the Facebook wall page for this chapter.
STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN
Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..
The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.
Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.
For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.
Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.
How to do this in an affordable way? Consider partnering with Cafe Press
Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?
Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.
One final thought as we are actually standing up to leave CPK.
If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.
Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.
Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
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