This blog is the online home of the New Mexico Area Contact for the Vasculitis Foundation.
Monday, December 22, 2008
CNMVF Chapter Meetings on 3rd Thursday of every month
I am setting the CNMVF Chapter meetings up for every month on the 3rd Thursday of every month. This will give us a predicable schedule to follow all year long.
The next get together following this announcement will be on January 15th, 2009.
I have a standing arrangement with the Albuquerque Grill. It is not quite formal, because our group is small. As we get bigger, they are ready to accommodate our future needs.
So, please come one come all... This is about getting to know each other better, offering mutual support, and learning more about the vasculitis condition.
The Albuquerque Grill is located on Rio Grande Blvd, just off Interstate 40. I chose it because it is conveniently located, offers a favorably diverse menu. If you know of another place, bring your ideas to the meeting and all good notions will be considered. The restaurant is attached to the Best Western Rio Grande Inn:
Best Western Rio Grande Inn
1015 Rio Grande Blvd. NW
Albuquerque, NM 87104
Tel: 505-843-9500 | Fax: 505-843-9238
Website: http://www.riograndeinn.com/restaurant.html
Menus: Downloadable PDF files
Dinner (329Kb)
Dress Code: Casual
You can see the door in the photo. Parking is right there in front, or you can also park on the side. There is a hotel layout map online here.
Please DO RSVP to Joseph Carpenter. See the CNMVF contact page for more info on how to do that. I like Email very much, but you can also call my home office and leave a message. Whatever works best for you.
Hope to see old friends and meet some new ones!
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
AARDA Upcoming Events in 2009
They spread these events around the country pretty good, so maybe more of us can manage to attend. If you do, please send me a letter and some photos. I would like to know, and it might also be nice to share what you learn with others.
Thanks!
: Joseph
:: American Autoimmune Related Diseases Association, Inc ::
"Upcoming Events"
http://www.aarda.org/upcoming_events.php
Listed below are upcoming events that the American Autoimmune Related Diseases Association (AARDA) either sponsors or cosponsors. AARDA sponsors scientific meetings in order to bring together scientists from many different medical specialties around the broad topic of autoimmunity. AARDA does this to increase cross fertilization of scientific knowledge about autoimmunity in the research community. Public forums are presented as a method of educating the public about autoimmune diseases in general.
Also listed are scientific meetings that may be of interest to the autoimmune scientific community but are not sponsored or supported by AARDA.
To view past events in which AARDA has participated, please click the "Past Events" button below.
Date | Event |
January 17, 2009 | PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, Scottsdale, AZ. From 1:00- 4:00 PM at the Civic Center Library, Civic Center Auditorium 3839 N. Drinkwater Blvd., Scottsdale. Open to the general public, patients and health professionals. Complimentary registration, but reservations are required. Contact AARDA at 586-776-3900. Featured speakers include Noel R. Rose, M.D., Ph.D.,director, Johns Hopkins University Center for Autoimmune Disease Research; Stephen Balch, M.D., medical director, Lupus Treatment Center, The Center for Specialty Medicine in Atlanta; Robert Phillips, Ph.D., director, Center for Coping in suburban New York City and Virginia Ladd, president and executive director AARDA. Seats are limited so we encourage you to make your reservation today by calling AARDA at 586-776-3900 or by email to aarda@aarda.org |
Jan 29-31, 2009 | 7th International Medinterna Meeting "Controversies in Autoimmune Diseases" in Porto. For more information contact the Secretariat at assmedinterna@hotmail.com |
February 13, 2009 | PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, in San Diego, California. Open to the general public, patients and health professionals. The FREE public forum will be held on Saturday, February 13, from 1:00-4:00pm at the Holiday Inn-San Diego-Bayside at 4875 North Harbor Drive, in San Diego. Reservations are required. Call the AARDA office at 586-776-3900 or send an email to aarda@aarda.org to reserve your seat. More information to come. |
April 26, 2009 | PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, in Scranton, Pennsylvania. Open to the general public, patients and health professionals. More information to come. |
Wednesday, December 17, 2008
Stress and Relativity
Tonight, just before I left work for home, some person drove up behind my truck, jumped out, and stole an item from the back of my truck. Then they drove away before they could be properly identified. It was an item that can be replaced, but it was still...
Well, in medical terms, this is what you call a stress event. A stressor. A bit of annoying little bit of phlegm on an other wise clear day.
It annoyed me. A lot.
I called a family member, who listened to my emotionally laden report. I really just called them to tell them I want to have better lights installed on the building to discourage such thieves and hoodlums from revisiting this "Stress Event" on anyone else. I was angry and thus not entirely rational... I just wanted to vent...
Instead, I got reasoned and rationed and suggested... The well-intentioned advice was good advice, and I was responding to that just fine. It was even helpful really...
Then, the tide turned and I got to listen further as I was told how I should keep my stress away from my daughter. I was befuddled and asked why, to which I was told, because, *DUH implied*, she has vasculitis, and therefore has enough stress to deal with.
That was worse than the burglary. I was also then reminded about one or two of my own recent failings, because I do not have a perfect temper. I am her father and she is a sixteen year old girl... so sometimes I get upset with my daughter when she does annoying things. Just as I annoy her sometimes. I suppose I should be shot, or something, but instead we just deal with it.
In response, I got the impression I was expected to accept this little drubbing and say something humble like, "You are right, I am a jerk, I will endeavor to be more perfect from now on, and try to put things in perspective... " Which of course was not said, but that is how I felt. The trick is, that perspective is exactly why that advice was inappropriate. Not that my family member could know that, but still..
Instead of blithely confessing my sins, I tried to explain perspective... I try to suggest that coping with vasculitis and the stressful event of having something stolen from my truck are not remotely related... but in response I was treated to an even more patronizing accusation of denial, then some kindly insistence that they are of course related. Apparently all stress is related... who knew? [Sarcasm intentional.]
It would seem that to some people, there is this concept of "Ye Old Bucket O' Stress," which apparently has a finite capacity. Once filled, the bucket can hold no more and then terrible things must surely happen.
This family member has dealt with lots of stress indirectly and directly, and has always been there for just about everyone in my family. I aspire to be as useful myself. So, there is no fault here, but the approach we take is completely different.
Instead of holding onto the stress, and counting it, and taking it out every night and counting it again... instead I choose to count blessings. I figure out what is possible to control, and I take control of that thing. The things I cannot control, I let go. I just do not think about them more than is absolutely necessary.
It is precisely this attitude, which explains why when my daughter was diagnosed, I was calm, and replied to the doctor, "So, then what can we do?" Then we proceeded to do those things. My daughter is a product of my teachings, and her attitude has always been to overcome all challenges. Treating vasculitis is a long hard road, and fraught with pitfalls, but we persevere with hope and courage. We do not dwell on thoughts of weakness.
When my truck gets burgled, I have no such calm. To me, the rest has become normal, and this burglary is the notable stressful event.
Everything else in my life, and most notably vasculitis, has given my daughter and I a new baseline. A baseline that most people cannot comprehend who do not have a rare incurable illness in the immediate household.
Most people have no idea what they can handle until they are tested. And when you have a rare incurable condition, as my daughter has, and which I also feel like I have... then it becomes necessary to live life by a different set of rules.
No counting stress. That is one of the new rules.
Putting stress at the forefront of our mind, would be dwelling on the negative. It would be self-defeating. Instead of saying, "Poor her, she has vasculitis, let us insulate her and protect her and keep all possible harm from her," I say let me arm her to the teeth with coping skills so she can take on all challenges. She does not need to be made weaker, she needs to be made stronger. When the going gets tough... as the saying goes.
It is not a big deal to let emotions fly when someone steals a replaceable item from your truck, but you have to accept the big stuff; you have to accept all the horrible side effects of Prednisone and how they screw with your entire life, and the every day alertness for any sign of a flare. Since vasculitis is systemic, it can happen anywhere, anytime, with little or no warning... so that is very stressful. But is it not a stress event.
Some days are better or worse than others, the in the big picture, dealing with vasculitis is normal to us now. If there is a "Ye Old Bucket O' Stress" then we must have traded it in for the bottomless Bag of Holding version, because dealing with medications, doctors appointments, fatigue, and side effects has become the normal way of being for her, and indirectly, for me also. And yet, I still get provoked by the ordinary things. It is a matter of perspective.
So, there is no rule that says when you have so much else to deal with that you must then take everything else in stride. In my opinion, the "Ye Old Bucket O' Stress" concept must come from the TwilightZone, because both stress and the ability to cope are expandable without limit.
Human beings are capable of adjusting to just about anything, and those who have not walked a mile... just have no clue.
Following my signature is a little article about stress. One of many such that we have read and absorbed this year, because coping with stress is important, it is just not something you need rubbed in your face. So this will be a brief reminder to others out there there that no matter how bad it gets, you can always do something about it.
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
InteliHealth:
"Coping With Stress
Stress is a part of life. From being stuck in traffic to falling behind on paying bills, too much stress can wreak havoc on our bodies. If you have a chronic illness, even small tasks, such as making dinner or picking up the children from school, can become overwhelming. Research on how stress causes medical illness is still in its early phases. We do know though that stress can cause physical symptoms, and may increase the rate of progression of a disease. Here are some ways to reduce your stress.
Adjust your attitude. According to researchers, you can better cope with stress by focusing on three ideas: challenge, control and commitment.
- Try to interpret stressful situations as challenges, not as threats.
- Determine what you can control; sometimes the only thing you will be able to control in a stressful situation is the way you respond, but that’s a start.
- Make a commitment to be good to yourself by eating healthfully, thinking positively and maintaining relationships with people you care about.
Learn to problem solve. The key, say experts, is to think through difficult situations systematically.
- Break problems into smaller pieces to make them less overwhelming
- Focus on problems that really need your attention and leave the rest
- Know your limits
- Learn to be flexible
- Be realistic about your choices
Communicate. Keeping your troubles inside only adds to stress. Find someone safe to talk to about your worries; it will reduce stress and help you deal with practical problems. If you have a chronic medical condition, participate in a support group.
Exercise. Regular exercise reduces stress. It helps protect the cardiovascular and immune systems from the consequences of stressful events. Whether it’s swimming, walking or another form of exercise, find time to do the activity on a regular basis.
Take control of your diet and your sleep. It’s hard to do, but if you eat a well-balanced, nutritious diet and get a good night’s sleep, you’ll have more energy to cope with stress. And if you’re tired and cranky, you’ll be more susceptible to stress-related ailments.
Do something for others. Volunteering for a worthy cause can be a great experience. It also can help you forget about your own problems and increase your self-esteem."
http://www.intelihealth.com/IH/ihtIH/WSIHW000/8271/21849/244360.html?d=dmtContent
Friday, December 12, 2008
ASSIST Vasculitis Study Podcast (updated info)
from Delesha Miller Carpenter
date Fri, Dec 12, 2008 at 9:41 AM
subject Vasculitis study podcast
Hello and happy holidays,
I am writing to you because you are listed as a Vasculitis Foundation contact and I wanted to let you know that that I have posted a podcast about the ASSIST Study. Many of you are already participants (thank you!), so if you know of other people living with vasculitis that might be interested in the study, could you please direct them to this link:
http://www.unckidneycenter.org/assiststudy.html
Currently, over 200 people have enrolled in the study and I am hoping to recruit about 85 more vasculitis patients.
Here is more information about the study in case some people cannot access the podcast:
The Accessing Social Support in Symptom Treatment (ASSIST) Study is recruiting persons living with vasculitis to understand how support from different people (spouse/partner, family member, friend, doctor) affects one’s ability to cope and effectively manage vasculitis. This is one of the first studies to investigate the effects of different supportive relationships for vasculitis patients.
To be eligible for the study, patients must have a diagnosis of vasculitis, currently be taking at least one medication to treat vasculitis, be older than 18 years of age, and have access to a computer with internet access. Participants will be asked to complete two confidential online surveys. The first survey should take no longer than 1 hour to complete, while the second survey takes approximately 30 minutes to complete. The surveys ask about how different relationships affect how patients cope with and manage treatment for vasculitis, including medication side effects.
Participants will receive a $10 gift card after completing the second survey.
If you have any questions, please email Delesha Carpenter, MSPH, at dlmiCLICKHERE@email.unc.edu. I can also be reached at 919-966-2561 ext. 302 or toll-free at: 1-866-462-9371.
Thanks so much,
Delesha Carpenter
Project Director
ASSIST and PAIRS Study
3300 Thurston Bowles CB#7280
University of North Carolina
Chapel Hill, NC 27599
Phone: 919-843-9256
Thursday, December 11, 2008
I missed the Chapter Meeting
I missed the meeting tonight. My daughter had car trouble, and I went to her aid. We just got home a few minutes ago.
Please let me know if you went. My hope is that several people went and this worked out alright. I am dying to know.
I had no RSVPs so nobody to call. I did not have the phone number for the restaurant, so no way to send word. I fretted the entire time, but there was nothing to be done. I had to take care of my girl.
I called the restaurant when I got home and they confirmed that at least one person did attend.
Will whomever did attend please send me an Email or call to let me know? Then at least I know who to extend my regrets to, and perhaps make it up to you by buying you lunch sometime?
Otherwise, I am going to work out some kind of RSVP list, so that I can at least let someone else know. And, I will put the restaurant phone number in my phone so I have that with me also.
This was such a freak thing, I do not expect it to happen again, but it never hurts to be prepared anyway.
My apologies to anyone who was put out, and when we meet in in January, I will make sure the bases are covered, even if the unexpected happens.
Saturday, December 6, 2008
CNMVF Chapter Meeting on December 11 at 6PM
I made a reservation at the Albuquerque Grill for Thursday, December 11th at 6PM.
Perhaps next year we can arrange a Christmas party, but this chapter is still growing. Still, bring your festive cheer with you. This is about getting to know each other better, offering mutual support, and learning more about the vasculitis condition.
The Albuquerque Grill is located on Rio Grande Blvd, just off Interstate 40. I chose it because it is conveniently located, offers a favorably diverse menu. If you know of another place, bring your ideas to the meeting and all good notions will be considered. The restaurant is attached to the Best Western Rio Grande Inn:
Best Western Rio Grande Inn
1015 Rio Grande Blvd. NW
Albuquerque, NM 87104
Tel: 505-843-9500 | Fax: 505-843-9238
Website: http://www.riograndeinn.com/restaurant.html
Menus: Downloadable PDF files
Dinner (329Kb)
Dress Code: Casual
You can see the door in the photo. Parking is right there in front, or you can also park on the side. There is a hotel layout map online here.
Please RSVP to Joseph Carpenter. See the CNMVF contact page for more info on how to do that.
Hope to see old freinds and new faces!
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Happy Thanksgiving! (Belated)
Now as I sit here convalescing over that, I was reminded that more than anything, I am thankful for my family.
I am thankful for my daughter, who came to my aid with a general willingness to help.
I am thankful for my father, who gave up sleep and eventually his own bed where I slept the first two nights away from the hospital.
I am thankful for my brother, who is a nurse, and who was on call when all this happened. He made sure I was taken care of, as he would with any of his patients, but when you know your bro is there looking out for you, it makes a difference.
I am thankful for my sister, who came to sit with me during the long and sleepy day after surgery. She kept my daugher company, and her presence was a constant reminder that I am never alone in this world so long as I have my family.
I am thankful generally for all of my family, whose well wishes came to me via the telephone and by word of mouth through those who were visiting me.
I am thankful for my coaching partner, Steve Kephart, who stepped up and helped cover my obligations when I could not be there.
I am thankful for my other friends, parents, and players who continue to send me Email get well cards as they learn about what happened.
Here are the other thanks I gave on Turkey Day...
- I am thankful that my daughters condition is apparently in remission.
- I am thankful that the first vasculitis episode attacked her foot, and not her heart.
- I am thankful that we are learning more every day about how to cope with this, and how to improve how she manages the side effects of the wonderful and horrible Prednisone.
- I am thankful for my family, whose continued offers of assistance bring me strength. Even when I am too proud to accept, knowing that I am not alone helps me.
- I am thankful that there are more treatment options than before, so we can move forward.
Tuesday, November 25, 2008
Stay healthy this flu season
How to Care for Problem Skin in the Winter - Stay healthy - Health.com
"Because psoriasis and eczema involve immune system responses, experts believe that many bacterial, viral, or fungal infections can make them worse.
Dr. Strober recommends getting a flu shot, if your primary care physician agrees that it’s appropriate. "Ask your primary doctor, and then get it and any other vaccinations that might help you fight infection." And follow basic steps to keep yourself healthy, like washing your hands frequently, getting good sleep, and exercising."
http://slideshows.health.com/slide_shows/10312/slides/11166
14 Ways to Avoid Colds and Flu - Healthy Living - Health.com
"Are you avoiding your co-worker with that hacking cough in the cubicle next to you? Do you draw your hand back from every doorknob? Have cold-and-flu phobia? Get a grip before the grippe gets you. We’ve consulted dozens of medical experts to bring you 14 ways to avoid colds and flu this season."
http://living.health.com/2008/02/11/snuff-out-sniffles/
NEW!! - Caregivers page
If you know of any resources for vasculitis, caregivers, your specific condition, or chronic conditions in general... anything at all that might be helpful to others, then please share it with me so I can share it with them.
Thanks!
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
Saturday, November 22, 2008
New Hampshire law bans sale of prescriber-identifiable prescription drug data
Lets be clear here. Some of these purposes are legitimate. Such as when a medical researcher collects data about patients in a clinical trial to figure out what works best. Or when researchers survey the larger body of patients looking for data that may identify disease trends.
The problem comes in when personally identifiable information about specific patients is collected and then sold for purposes that have NOTHING to do with their health care. One obvious example of this is when pharmaceutical companies use this data to fine turn their pitch to your doctor, so they can convince your doctor to prescribe some drug they want to sell, regardless of whether or not it may be the best treatment for your condition.
This issue relates to collected patient identifiable information which is then sold as a database for other commercial purposes.
Health care privacy is a big issue for those who have much to gain if information is shared properly and well, and much to lose if it is shared badly and without concern for the patient.
When the drug companies put sales ahead of solutions, then we have a problem. There is a reason why drug research for hair loss, obesity and erectile disfunction get the lion's share of the research funding, and rare diseases get the leftovers. There are more people with more money to spend on those drugs, than there are patients who need cures for vasculitis.
Decisions regarding what medications you should take must come from the informed partnership between you and your doctor. if either of those parties are unduly influenced, then the decision becomes biased. Would you rather take the name brand drug, or the one that works? They are not always the same thing.
I encourage all of you to keep your ears and eyes open and support anything that promotes your well being, such as a SECURE electronic medical records system that is PATIENT FOCUSED, and not that merely benefits the insurance and pharmaceutical companies, such as we have now.
Here is the latest on the New Hampshire case.
Electronic Privacy Information Center - http://epic.org/
Court Upholds New Hampshire Prescription Privacy Law
Today, the First Circuit Court of Appeals upheld a New Hampshire law that bans the sale of prescriber-identifiable prescription drug data for marketing purposes. In August, EPIC and 16 experts in privacy and technology filed a "friend of the court" brief urging the federal appellate court to reverse a lower court ruling that delayed enforcement of the New Hampshire Prescription Confidentiality Act. The experts said the lower court should be reversed because there is a substantial privacy interest in patient data that the lower court failed to consider. The New Hampshire Attorney General also defended the law, calling pharmaceutical representatives "invisible intruder[s] in the physician's examination room." Data mining companies challenged the law, claiming that the privacy measure violated their free speech rights. For more information, see EPIC's IMS Health v. Ayotte page. (Nov. 18)
Friday, November 21, 2008
Olympic Skater Irina Slutskaya - CSS vasculitis patient update
Irina Slutskaya too busy to think about retirement
The Associated Press
Published: November 22, 2008
While the world's best competitive figure skaters were grinding through yet another competition, Irina Slutskaya was half a world away, snowboarding in the Rocky Mountains.
"It's a different life," she said Friday with her trademark bubbly laugh. "This is just great."
The two-time world figure skating champion and Olympic medalist may not have skated competitively in almost three years, but don't call her retired.
She is, if possible, even busier now than when she was competing. She's hosting TV shows in her native Russia, and skating on a "Dancing with the Stars"-like program. She's doing some acting, and this week she came to the United States for a show that promotes heart disease awareness.
And in her favorite role of all, she's a mom. Her son, Artem, turned 1 earlier this month.
Today in Sports
Del Potro falters, and Spain pulls even in Davis Cup
Missing ADT cut, Sorenstam's LPGA career comes to an end
Steelers' defense controls Bengals, 27-10
"It's everything," she said of motherhood. "I want this baby for a long time, and now I'm just happy."
In every part of her life.
Slutskaya, who turns 30 in February, was one of the world's best for a decade, often battling good friend Michelle Kwan for the top spot on the podium. She had incredible athleticism, allowing her to pull off the toughest jumps — she can still do all five triples — and spins.
Her trademark was a double Biellmann, where she reached back with both hands, grabbed the blade of one skate and pulled it straight over her head, then did the same thing with the other skate.
She won a record seven European titles, and was the world champion in 2002 and 2005 — the latter after she missed a year with a heart ailment that sapped her strength and energy. She was the silver medalist at the Salt Lake City Olympics, and took the bronze four years later in Turin.
"Each moment of life is different. In those times, when I was practicing, that was an important thing for me," she said. "I took every single practice and I don't know another life. I knew I loved it."
But unlike some athletes, who find it hard to adjust when they stop competing, Slutskaya made the transition as easily as she changed costumes. Always popular, she was immediately in demand in Russia to do TV shows, theater and movies. She was part of the "Champions on Ice" tour in the United States, and did similar shows in Russia.
And having been married since 1999 to Sergei Mikheev, she knew she wanted a family.
"I can't have a baby when I was in the worlds and the Olympics," she said. "I can't do (those) two things together."
Artem looks like Sergei, Slutskaya said, though "maybe a little bit of (my) cheeks." He is already walking, has four teeth and can say a few words.
Slutskaya has taken him to the rink a few times, but he hasn't been on the ice yet.
"He just started walking!" she said. "It's too early."
Though she'll put him in skates at some point, Slutskaya said she doesn't care if her son becomes a skater like her. She wants him to try snowboarding and bicycling and swimming — all the other sports she and her husband enjoy.
Slutskaya said she tries to keep up with what's going on in competitive skating, and is disappointed Russia is still trying to find someone who can be a medals contender. Only one Russian woman advanced to the free skate at last year's world championships, and Ksenia Doronina finished 17th.
At the Cup of Russia on Friday, there were no Russians in the top five of the women's short program.
"I think that will be changing," she said. "We have a good program, and there will be good skaters."
Just don't expect her to be one of them.
While Slutskaya still skates several hours a day, she said there is nothing driving her to compete again. She's been to three Olympics and while she might not have won the gold, she was a world champion.
"I don't see the target. I don't know why I have to go there," she said. "I have almost all the titles."
Besides, she's got plenty of other things to occupy her.
She performed Wednesday night in "Skate for the Heart," a show that raises awareness for heart disease. Also starring Ekaterina Gordeeva, Rudy Galindo and musician Kenny G, the show will be broadcast on NBC on Feb. 7 as part of national heart month. It's a cause that, obviously, means a great deal to Slutskaya.
After having a high fever for several weeks in 2003, doctors found that the sac around Slutskaya's heart was inflamed. She was also later diagnosed with vasculitis, an inflammation of blood vessels that can cause major vascular organs to deteriorate.
"I really like exhibitions and I really like to skate for people," she said. "Maybe somebody will watch me and say, 'My gosh, if she fought through her illness, why should I be sitting here?'"
Monday, November 17, 2008
CNMVF website updates - new CAM info and a Health.com gadget
Normally, I leave it to you to identify the new material by simply reading the site. However, I added a few little things to the website today that bear special mentioning...
On the home page, I added a gadget labeled "Health.com Latest News and Wellness Advice Gadget." That box links to the top ten articles at Health.com, and the tabs link to even more news and wellness information. The Health.com Videos are YouTube videos, usually of a doctor, that are pretty useful if you want an overview on the selected topic. I have watched a lot of them and they are well done.
I have no control over what Health.com chooses to present, but I have been playing with with this gadget on my Just For Fun page and found enough worthwhile articles that it seems worthwhile to offer it you you folks on the home page. You will find this on the home page under the introductory text. Just scroll down a bit, you cannot miss it.
The Health.com website is just a good resource anyway. The Drug Finder and other tools are linked to commercial databases used by health care providers, and are as good as the other tools I have listed for looking up medication information. Like any other information, you should check multiple sources to confirm accuracy, eliminate the chance of bias, and also to confirm how timely any particular information is. That is why I list so many choices. You will find which is your favorite site, but I encourage you to cross check that periodically.
Plus, remember that Google is one of your health care partners. Google Health went live this year (www.google.com/health/), and "Google is the default starting point for most health searches. And people are increasingly turning to their computers and the Web for health information and advice. A Harris poll, published last month, found that 52 percent of adults sometimes or frequently go to the Web for health information, up from 29 percent in 2001. "
See: Steve Lohr, “Google and Microsoft Look to Change Health Care,” The New York Times, August 14, 2007, sec. Technology, http://www.nytimes.com/2007/08/14/technology/14healthnet.html.
I also expanded the Natural, Alternative, and Complementary Medicines section of the CNMVF Education page: http://www.nmvasculitis.org/Home/support/education. These new links provide more background information about Complementary and Alternative Medicines (CAM), as well as more resources for investigating CAM therapies BEFORE you try them.
Most vasculitis patients are already taking a pretty smashing amount medications. so it is very important to talk with your doctor AND pharmacist before altering or adding to your treatment cocktail. They need to know what you are taking, so they can factor that information into their decision making, and so they can alert you to any obvious contraindications.
Even if you and your doctor do not agree about CAM therapies, tell them what you are doing.
Do not rely on your doctor and pharmacist alone to know everything, or even to do the research. Your doctor will be familiar with his or her main treatment protocols. The computer at the pharmacy will red flag any documented reactions between medications, and the pharmacist should tell you about those as well as any real world experiential knowledge they may have. However, when you factor in supplements and other alternative products, you are wandering off the beaten path and so must take extra responsibility for your own health care. You must do some research.
I am an advocate that each patient should invest in their own medical care, and think of themselves as equal partners in the mission to improve their own health.
Good doctors are amazing, but they are not going to be able to spend the kind of time you can spend to check out every aspect of your condition. The better informed you are, the better questions you will ask your doctor, and the better your quality of care will be.
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Friday, November 14, 2008
CNMVF Monthly Report - November 2008 Meeting
Joseph Carpenter here with what is cooking at the CNMVF. My full report is being sent to the CNMVF Google Group, which is our own private little listserv. You can view posts, and you can send them to the group as well from your Email account or on the web.
Who sees that Group? The same folks you can meet at a monthly chapter meeting are the same folks you might trade vasculitis "secrets" with anyway! Speaking of which... here is what is going on...
*November 2008 Chapter Meeting Summary*
We had our second meeting, which is slowly becoming a monthly event. We met on Thursday, November 13, 2008 at 6PM at the Albuquerque Grill.
I attempted to contact 22 patients from within a 70 mile radius of Albuquerque. A few had numbers that were out of service, most I left messages for, and a few I had the pleasure of talking with personally. Of those I spoke with, all were very happy to hear about the local chapter. I think the chapter meeting this past Thursday was just short notice for most people. We will meet again next month, so I hope to meet more of you then. More information about the next meeting at the end of this report.
---
MORE GOOD STUFF APPEARS IN THIS SPACE IN THE FULL REPORT
Like what?
Like more details about the meeting and what we learned about one another...
Like about a form of vasculitis most of us never heard of...
Like about a *New VF Member* ...
Like about the *NM Vasculitis Doctors List*...
Like about *Pain therapy for Peripheral Neuropathy* ...
Like about *Blogging is Therapy*
Like about *Online Medical Research*
---
Then you get to see the rest here... lucky you!
*Next Chapter Meeting*
This is now scheduled for December 11th at 6PM. For now I will keep that location at the Albuquerque Bar & Grill, 1015 Rio Grande Blvd. NW, Albuquerque, NM 87104. Just South of I-40 on Rio Grande Blvd. You should see an announcement in the mail sometime next week, and with luck, we will get more members to attend next time. I look forward to meeting more of you.
Well folks, it is the end of my day, and I have to go meet some people for a movie. What? You think I have no life? Ha! I say,,, Ha! :o)
Have a great weekend, and I hope to see you next month!
To view the redacted portion of this most interesting and informative report :o), you need to subscribe to the CNMVF Google Group.
: Joseph Carpenter
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
http://www.nmvasculitis.org
*Hey! You can get this kind of news sent to you automatically in your Email
inbox.*
Just head on over to
http://groups.google.com/group/cnmvf.
Then subscribe to the CNMVF Google Group and once I approve your membership, you will be able to view a copy of the posts according to your preferences. You can get them delivered to your inbox, or you can just review them online and get no Email at all. It is up to you. You can also use that to send mail to the CNMVF Google Group yourself to ask a question of the group, or just let off some steam, whatever you think the group can help you with. If you decide to opt out later, you can do that too. I wanted to set it up this way so you can manage your privacy settings yourself.
Friday, October 31, 2008
CNMVF Chapter Meeting on November 13th at 6PM
I am happy to announce the next chapter meeting! I made a reservation at the Albuquerque Grill for Thursday, November 13th at 6PM.
This is a social event. We may also take a few minutes to discuss some ideas for awareness events that this chapter can sponsor or participate in the future. This is about getting to know others who understand, and who may benefit from what you know, or who may know something that will help you. Through mutual sharing and support, we all do better.
The restaurant will set up a table for about ten people. We had seven attend our inaugural meeting in August. I will have an announcement sent out by VF national office next week, and if more people RSVP, then I can expand that as needed. To avoid costs I started small.
The Albuquerque Grill is located on Rio Grande Blvd, just off Interstate 40. I chose it because it is close to the center of the city, offered a favorably diverse menu, and is also convenient for our out of town members. The restaurant is attached to the Best Western Rio Grande Inn:
Best Western Rio Grande Inn
1015 Rio Grande Blvd. NW
Albuquerque, NM 87104
Tel: 505-843-9500 | Fax: 505-843-9238
Website: http://www.riograndeinn.com/restaurant.html
Map:
Operation Hours:
Breakfast: 6am – 11am (daily)
Lunch: 11am – 5pm (daily)
Dinner: 5pm – 10pm (daily)
Menus: Downloadable PDF files
Breakfast (247Kb)
Lunch (343Kb)
Dinner (329Kb)
Dress Code: Casual
You can see the door in the photo. Parking is right there in front, or you can also park on the side. There is a hotel layout map online here.
Please RSVP to Joseph Carpenter. See the CNMVF contact page for more info on how to do that.
Hope to see you all there!
I am planning for a certain number, and if it gets bigger, then we can adjust. Please let me know if you plan to come.
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Monday, October 20, 2008
Chapter Meeting in the works
I will arrange a place, then select a time. Knowing that whatever we choose will not be perfect for everyone, we will do the best we can, and then keep having meetings.
If you have ideas about when and where we could meet, please send Email to Joseph Carpenter.
I will contact some local restaurants and see about a meeting room. I will also contact the clinics. Some VF chapters have been given access to meeting rooms at the hospitals, so maybe we can swing that too.
Stay tuned for another announcement with more details to follow once we have a place and a time and enough notice to send mail to all the potential chapter members.
Thank you all and I hope to meet you soon,
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Sunday, October 19, 2008
CNMVF October News
CHAPTER MEETINGS?
We met August 28, and have not met since. September was busy and some people were traveling. Still, most agree that it is necessary to hold regular meetings, so I will commit to that goal right now.
There was a tentative plan to try for a meeting on October 30, but one thing led to another and that was not confirmed. So it is being rescheduled for November. Chalk it up to growing pains folks, but we must allow enough time to get a mailing out to the VF members who might want to attend.
What is a chapter meeting?
The way I see it, this is basically a social event that is also part support group, and part planning meeting for things we can do to promote awareness and increase education about vasculitis.
Those who attend can and do share their stories and talk about the things that work and don't work to help manage their vasculitis condition or that of a loved one.
It is open to all vasculitis patients, and caregivers, and also to friends and family of patients and caregivers who want to know more, or who have something to contribute. If you were struggling with the question, "What can I do?" then come to a meeting and get some ideas.
VASCULITIS AWARENESS WEEK
For VF Awareness week (September 21-28) this chapter sent announcements regarding the online Webinar that was helpd on September 22. That was a first time effort and there were some issues. I am still waiting new on when it will be rehosted, or when the presentations might be available online. When I know, I will post that in this blog.
Some of that information repeats what was covered at the 2008 Vasculitis Patient Symposium in June 2008. You can get DVDs of many of the various seminars at the Vasculitis Foundation Store.
The other purpose of that announcement was to initiate contact with the rheumatology clinics in Albuquerque. Most did not respond, but we will keep at it until they understand they have resources also. The key to increasing awareness is constant persistent sharing of what we know.
Hey, how about a chapter T-Shirt? People wear this and it draws attention to Vasculitis.
Are you wearing a Vasculitis pin? Maybe a sticker?
Do you have a Vasculitis Foundation bumper sticker or ribbon magnet?
Do you need holiday cards? VF is selling some very nice holiday items right now.
You can get these items at the Vasculitis Foundation Store online. Check that out now and support VF research with your purchases, while also promoting awareness.
NM Vasculitis Doctors
This online resource is growing slowly. We have some of the rheumatologists listed. is your doctor listed? If you know of a doctor, in any field, who has experience treating vasculitis, please take a minute right now, and go fill in the form: NM Vasculitis Doctors Form.
I have already spoken to a woman who had vasculitis symptoms, and struggled without a diagnosis for years. She had no idea where to go. By collecting contact information about vasculitis doctors in New Mexico, I was able to help her get in touch with a doctor who could at least confirm her diagnosis. Of the things we can do, this is a big step in the right direction. Won't you please help?
Happy Halloween everyone!
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Wednesday, October 1, 2008
NATIONAL FAMILY CAREGIVERS MONTH
http://www.thefamilycaregiver.org/press_room/detail.cfm?num=114
WHITE HOUSE PROCLAIMS NOVEMBER AS NATIONAL FAMILY CAREGIVERS MONTH
October 2008 — National Family Caregivers Month, 2008 A Proclamation by the President of the United States of America
During National Family Caregivers Month we recognize and celebrate the many individuals throughout our country who work each day to ensure a better quality of life for their family members. Through their selfless action, these caregivers provide their loved ones support and comfort as they age, combat illness, or suffer from disability.
Our Nation is compassionate, and we believe in the sanctity of life at all stages. Through tireless efforts and inspiring deeds, many Americans care for loved ones in need. By acting as in-home care providers, people across our Nation are helping to ensure that their family members are provided with love, comfort, and security. My Administration has worked to offer caregivers support and training. In 2006, I signed the Lifespan Respite Care Act of 2006, which established a program to help family caregivers get access to affordable and high-quality respite care. In addition, the National Family Caregiver Support Program encourages cooperation among government agencies and other organizations that support and work with family caregivers.
National Family Caregivers Month is an opportunity to recognize those who serve a cause greater than self and contribute to the well-being of their loved ones. Family caregivers are soldiers in America's armies of compassion and set an inspiring example for their fellow citizens.
NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim November 2008 as National Family Caregivers Month. I encourage all Americans to honor the selfless service of caregivers who support their loved ones in need.
IN WITNESS WHEREOF, I have hereunto set my hand this twenty-ninth day of October, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.
GEORGE W. BUSH
Monday, September 22, 2008
The Accessing Social Support in Symptom Treatment (ASSIST) Study
Date: Mon, Sep 22, 2008 at 1:55 PM
Subject: New Mexico support group
To: Karla, Joseph
Hello,
I am writing to you because you are listed as a contact for your area in the Vasculitis Foundation newsletter. I wanted to let you know that there is a new research study at the University of North Carolina Kidney Center, the ASSIST Study, that might be of interest to vasculitis patients in your area.
The Accessing Social Support in Symptom Treatment (ASSIST) Study is recruiting persons living with vasculitis to understand how support from different people (spouse/partner, family member, friend, doctor) affects one’s ability to cope and effectively manage vasculitis. This is one of the first studies to investigate the effects of different supportive relationships for vasculitis patients.
To be eligible for the study, patients must have a diagnosis of vasculitis, currently be taking at least one medication to treat vasculitis, be older than 18 years of age, and have access to a computer with internet access. Participants will be asked to complete two confidential online surveys. The first survey should take no longer than 1 hour to complete, while the second survey takes approximately 30 minutes to complete. The surveys ask about how different relationships affect how patients cope with and manage treatment for vasculitis, including medication side effects.
Participants will receive a $10 gift card after completing the second survey.
If you think patients in your area may be interested in this study, please feel free to forward this email and my contact information to them. I can also mail study brochures to you if you would like to distribute them at an event or support group meeting.
Currently, 130 people have taken the survey and I am hoping to recruit 170 more people, so there is lots of room for enrollment!
If you have any questions, please email Delesha Carpenter, MSPH, at dlmiCLICKHERE@email.unc.edu. I can also be reached at 919-966-2561 ext. 302 or toll-free at: 1-866-462-9371.
Thanks so much,
Delesha Carpenter
Project Director
ASSIST and PAIRS Study
3300 Thurston Bowles CB#7280
University of North Carolina
Chapel Hill, NC 27599
Phone: 919-843-9256
Pianist Andrea Pittini to Donate Download Earnings to the VF!
VF Webinar was troubled, but worthwhile
The talks by Dr. Peter Merkel, and Dr. Carol Langford were abbreviated due to technical difficulties. The talk by Dr. Ulrich Specks was complete and was excellent. The Q&A session was preempted because of time constraints resulting from earlier technical issues.
Sure, there were some technical difficulties, but it is important to keep the eye on the prize. Next time it will be better.
In a few days, those who registered for this webinar will get an Email with links to either a live rebroadcast of the webinar, or a downloadable link of the full presentation.
Stay tuned and be patient folks. This was a first, and when using technology, the first time is usually a bumpy ride. The organizers will iron out the kinks and next time will be better.
Now, on to other things...
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Reminder: Vasculitis Webinar TODAY! at 10:30AM for New Mexico listeners
SPECIAL ANNOUNCEMENT Join us for a Webinar on September 22 Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 The Vasculitis Foundation (VF) invites you to participate in the first-ever webinar on vasculitis. The 60-minute webinar will define vasculitis and discuss best treatment practices. There is no fee for this webinar. Vasculitis is a family of diseases, including Behcet's, Buerger's, Central nervous system, Churg Strauss, Cryoglobulinemia, Giant cell arteritis, Henoch-Schonlein purpura, Hypersensitivity vasculitis, Kawasaki, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu's and Wegener's. The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis. The presenters for the webinar are: Dr. Carol Langford is the Director of the Cleveland Clinic Center for Vasculitis Care and Research. Dr. Peter Merkel is the Director of the Boston University Vasculitis Center. Dr. Ulrich Specks is with the Division of Pulmonary and Critical Care Medicine at the Mayo Clinic. The Vasculitis Foundation educates patients, family and friends of patients, the medical community and the public through its website, bimonthly newsletter, information packets, 800-number and patient support staff, and symposia. This will run in your web browser. Adobe Flash Player required. System Requirements PC-based attendees Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista Macintosh®-based attendees Required: Mac OS® X 10.3.9 (Panther®) or newer Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 Once you register, you can also use a telephone to call in. If your computer does not have a microphone that is an option. You will need to use the Access Code and Audio PIN for your specific registration, then call one of the numbers listed below. If you do not have an access code then you need to register first. Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Conference Call: Audio: Use your microphone and speakers (VoIP) or call in using your telephone. United States: (702) 824-9512 Access Code: xxxx-xxxx-xxxx AudioPIN: xxxxx Australia: +61290370214 Austria: +43720880313 Belgium: +3228081214 France: +33426460175 Germany: 4989549986652 Ireland: +35315262941 Italy: +390289038656 Netherlands: +31708912549 New Zealand: +6499250408 Spain: +34911875535 Switzerland: +41435005946 United Kingdom: +442030514836 |
Thursday, September 18, 2008
Resource for caregivers
: Joseph
Family Caregiver Alliance (FCA): FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.
More than 25 years ago, a small task force of families and community leaders in San Francisco came together to create support services for those struggling to provide long term care for a loved one who did not "fit" into traditional health systems: adults with Alzheimer's disease, stroke, Parkinson's, traumatic brain injuries and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles.
http://www.caregiver.org/caregiver/jsp/home.jsp
Events at the NM Biopark Society
In relation to NMVasculitis, I see potential here for socializing with our chapter members, and also a few opportunities for awareness events. Especially the Run for the Zoo. I think we can get patients, and/or their friends and family members, to carry a banner in the walk and figure out some way to get co-sponsorships for both our organization and the zoo. I know someone in the marketing department at the zoo, and will make some calls on this to see if there is a chance to make something happen. At least if they will let us carry the banner during the walk. That would gain us some eyeball awareness and maybe also some press coverage as well.
The events list includes all three venues:
> Rio Grande Zoo
> Albuquerque Aquarium
> Rio Grande Botanical Park
20th Annual ZooBoo
October 25 & 26 2008
River of Lights at the Botanic Garden
November 24 - December 30, 2008
(Not open December 24&25)
Earth Day - Party for the Planet
April 22, 2009
24th Annual Run for the Zoo
May 3, 2009
Mother’s Day Symphony Concert at the Zoo
May 10, 2009
ZooMusic 2009 Concert Series
Friday Nights in the Zoo
Summer Nights 2009 Concert Series
Thursday nights in the Garden
Wednesday, September 17, 2008
Vasculitis on 770KOB!
What a great way to kick off awareness week! Thanks so much to Carlene Hobbs for setting this up.
Say a prayer, I'm nervous!!!
Karla K
Sunday, September 14, 2008
2008 Vasculitis Symposium DVD's
2008 Vasculitis Symposium DVD's
If you missed the 2008 VF Symposium at the Mayo Clinic, now is your chance to hear the important lectures the attendees did. If you did attend, you may still want a set for your library.
They are an important resource for the latest news from the vasculitis research community.
*$60.00 (includes packaging/shipping.) from the Vasculitis Foundation Store.
Thursday, September 11, 2008
Awareness: Highlighted Member articles
They are encouraged to share them with each other, and also with the Vasculitis Foundation.
I have noticed that many times vasculitis is such a monumental event in a persons life that the local media takes notice and will publish special interest articles about a patients story.
If you would like to share your story, please do. If you would be willing to be interviewed by local media to have your story published in the New Mexico newspapers, magazines, as well as on radio and maybe television, then your story can help spread awareness about vasculitis.
People will say, “I saw that on the news,“ or ”I read about that in a magazine once.“
We WANT people to talk about vasculitis, so that they will know what to expect if they or their loved one end up with it. We also want them to know about it so they can decide if they would like to help fund new vasculitis research.
On a totally voluntary basis, chapter members are encouraged to share their story and to consider sitting for an interview to help spread the word. The way I look at it, the more people who know, the closer we get to better treatments or a cure.
: Joseph
Fundraising and Awareness: Cobranding silicone wristbands
Buy them in advance and sell them to your friends! Tell them they can have a cool wrist band, but you need a donation.
I was going through my drawers last night and came across a silicone wrist band for Breast Cancer Awareness.
What was unique about this was the logo for Walgreen’s pharmacy. I recalled then that I had purchased this wrist band at Walgreen’s for the listed price of $2.00.
Now, this makes me wonder... why not do this sort of B2B partnership with more stores for the Vasculitis Foundation?
Any big retailer would be a likely candidate, though after a little brainstorming I really favor Target. Both because it is a brand name I trust and because their logo is also a red circle, representing a target. Just as the Vasculitis Foundation logo is three red circles representing small medium and large blood vessels. We want to target a cure for vasculitis! Could you find a more obvious partner?
Now, how do we go about meeting the decision makers at Target Corporation? Somebody should put Bob Haas on this project. Just selling wrist band as end caps at the Target check out counters would likely make thousands of dollars every year just in impulse buys, without even needing to organize an event. Depending on the profit, maybe kick back a nickel to Target to pay for the shelf space... and BAM! you got a money maker.
Next, you organize a nationwide event in conjunction with Target, at all locations that have a local VF chapter, then you get even more opportunities to raise awareness and make money. Combine that with a nice raffle, and you get some pretty great word of mouth.
Any way you slice it, the idea is to get the contact information to the public to increase awareness, and give them a chance to donate at the same time.
What about offering multipack silicone wrist band in partnership with other organizations? No discount, just offer it as another item. For $2.00, you get our organization, and for $8, you can get Vasculitis Foundation, Red Cross, American Heart Association, and United Way... or something like that. All the better if the multi pack is also multi colored.
Each chapter can set up a partnership with a print on demand outfit like Cafe Press, to have the organization logo printed on any number of items. That is another idea that I will discuss in a moment.
Wednesday, September 10, 2008
Join us for a Vasculitis Webinar on September 22
Monday, September 22, 2008
12:30 PM - 1:30 PM EDT
Join us for a Webinar on September 22
The Vasculitis Foundation (VF) invites you to participate in the first-ever webinar on vasculitis. The 60-minute webinar will define vasculitis and discuss best treatment practices. There is no fee for this webinar.
Vasculitis is a family of diseases, including Behcet’s, Buerger’s, Central nervous system, Churg Strauss, Cryoglobulinemia, Giant cell arteritis, Henoch-Schonlein purpura, Hypersensitivity vasculitis, Kawasaki, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu’s and Wegener’s.
The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.
The presenters for the webinar are:
Dr. Carol Langford is the Director of the Cleveland Clinic Center for Vasculitis Care and Research.
Dr. Peter Merkel is the Director of the Boston University Vasculitis Center.
Dr. Ulrich Specks is with the Division of Pulmonary and Critical Care Medicine at the Mayo Clinic.
The Vasculitis Foundation educates patients, family and friends of patients, the medical community and the public through its website, bimonthly newsletter, information packets, 800-number and patient support staff, and symposia.
System Requirements
PC-based attendees
Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista
Macintosh®-based attendees
Required: Mac OS® X 10.3.9 (Panther®) or newer
Reserve your Webinar seat now at:
https://www1.gotomeeting.com/register/355089098
Tuesday, September 9, 2008
99% of fund raising goes to research
99% of the money raised by the VF goes to fund seed grants to support vasculitis research.
Here is a list of some of those projects:
VF Funded Research | Vasculitis Foundation
http://www.vasculitisfoundation.org/vasculitisfundedresearch
This list downloaded on 9/7/2008
"VF Funded Research
The VF recognizes the importance of encouraging and supporting research to gain a better understanding and knowledge of vasculitis.
The VF Research Grant Program was established in 2001 and provides one and two year grants to support pilot studies investigating the causes of vasculitis, developing more effective treatments and improving diagnostic tools.
Following are some of the studies funded by the VF.
* Short-term cyclophosphamide therapy in a cohort of over 200 Patients
* Host-microbial interactions in Wegener’s Granulomatosis: The role of ANCA and S. aureus persistence
* The role of shear stress in neutrophil proteinase-3 expression and its importance in vascular injury sites in WG
* Analysis of NKG2D expression on CD28
* Identification of Novel Wegener’s Granulomatosis Susceptibility Genes
* Environmental Factors in the Pathogenesis of Wegener’s Granulomatosis
* Localized Wegener’s Granulomatosis: Epidemiological, clinical and histopathological characteristics
* Wegener’s Granulomatosis and Microscopic Polyarteritis Case Control Study in Western Montana
* Development of a Measure to Assess Patients’ Adherence to Vasculitis Treatment Regimens
* A Pilot Project towards Establishment of a US/Canadian Diagnostic Registry of Children with WG and Related Vasculitides
* Renal transplantation in WG: mortality, allograft outcomes, and incidence of malignancies from the United States
* Identification and characterization of immunodominant, conformational epitopes of anti-neutrophil cytoplasmic antibodies
* Gene Expression Profile of Temporal Arteritis in Giant Cell Arteritis"
Monday, September 8, 2008
Medline Plus Patient Education Tutorials: Vasculitis
www.nlm.nih.gov/medlineplus/tutorials/vasculitis/htm/index.htm
There are 50 slides and the tutorial takes about 10 minutes if you run the self-playing tutorial without questions. You can go a little faster if you run the presentation manually, but you might miss something.
This is an overview. For a more specific understanding about specific types of vasculitis and their unique symptoms and treatments, please visit the list of vasculitis diseases at the Vasculitis Foundation website.
Thursday, September 4, 2008
Inspirational Churg Strauss success story and video
Irina once met with CSSA founder Jane Dion to share her success story. (If I can find that article, I will post a link here.)
The person who posted the video below said this: "I used the promotional album of Anastasia by David Newman, an animated film made by FOX (not Disney) in 1997.
Irina's story is a story of resurrection, just like Anastasia's. Diagnosed with vasculitis in 2003, many thought she'd never skate again. Prayers went out that she might one day live a normal life, let alone skate. She proved them wrong by coming back in 2004 and was undefeated in 2004-05 season, and earned her second world championship. Truly an inspiration."
Tuesday, September 2, 2008
Event idea: Baseball tournament
She is also active with little league, All-Stars, and some other alphabet soup baseball related organizations. Point is she is connected to youth and recreational league baseball in Albuquerque.
So, I asked her, "Hey, how hard would it be to organize a baseball tournament?"
Yeah... I kind of set loose an irresistable force... She set about making a few phone calls to the right people and now it looks like we may have the beginnings of a fundraiser tournament for next year... At least the pot is boiling and we have some rocks. Next we need carrots... then celery... how do YOU make Stone Soup? :o)
"On Tue, Sep 2, 2008 at 4:04 PM, Kathleen wrote:
I have already talked to a few people and they are very excited about
the idea of an amature, just for fun and fund raising baseball
tournament. Dana will help us when ever we are ready but I can say
from experience, things like this work best when planned well in
advance. Not only do we need to secure the field space but also I need
to talk to people and get donations for awards and general operating
costs to deflect from the profits. I too want to keep things simple but
there are a few logistics to maneuver for this to happen and that means
that we have to either get it sponsored by Little League or USSSA to
cover insurance since it will be a youth event. Not a huge deal, just
needs some planning."
Heck, come to think on it... Kathleen also knows people on the semi-pro baseball team organization, so there is a slim possibility of organizing an Isotopes event. Like "Vasculitis Night" or whatever... That would mean reaching a more or less attentive of audience several thousand people all at once... Seeing the Vasculitis message played out on the screen and however we decide to do it. I think sporting events might be huge for us...
I love my sister. :o)
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Awareness: Ask Girl Scout and Boy Scout Troops to help
She said, "We can possible solicit cub scout groups or girls scout troops or even
school groups to consider the Vasculitis Foundation as their community
service project."
I love her idea about recruiting GS and BS troops for community
service projects! That was unique so far and purely genius! I will put
together a pitch and get on that right away to develop a plan of action. Maybe make it a contest with prizes for certain level of donations, or
.... Hey you!... Yeah you, reading this blog... What do you think? :o) Comment this blog and share your ideas... Please.
A lot of those troops are
still getting organized and have not made commitments for what they are
going to do this year. Now is a great time to ask them for help.
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
About Google Health
"Google Health allows you to store and manage all of your health information in one central place. And it's completely free. All you need to get started is a Google username and password.
Google believes that you own your medical records and should have easy access to them. The way we see it, it's your information; why shouldn't you control it?"
This service went live at the beginning of summer 2008, after years of beta testing. It is still being developed as doctors slowly buy into the idea. I am using it to a limited extent, and may use it more as new providers become available.
It is worth considering, because whether it be this solution or some other technology, centralized online medical records that are under the patients control is an idea whose time has come. More than come... As vasculitis patients and caregivers, we should be demanding it loudly.
For more information, check out: http://www.google.com/intl/en/health/about/
Awareness Idea: Join in group walks as a team
So, how about we join in other runs/walks as a team to promote awareness?
Consider the annual Run for The Zoo as an example...
Our chapter members would walk together, or in some cases, maybe get pushed in a chair, then we carry a banner or a sign.
Without being the official organizers, we would not raise money, but if the event has media coverage, it would be a great way to get some grass roots attention.
It is also possible we could get permission to put up an information booth near the start or stop point of the event. Then we could solicit donations, or at least direct people to the website, etc.
Monday, September 1, 2008
Contact Your Federal Elected Officials
Sunday, August 31, 2008
Vasculitis Awareness Week Handbook
: 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
Friday, August 29, 2008
Getting information about drugs, supplements, and complementary medicines
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
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
Thursday, August 28, 2008
Photo Collage from 2008 VF Symposium
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).
Tuesday, August 12, 2008
Welcome to the VF Central NM Chapter
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