Will you tell me your story?
The Vasculitis Foundation is preparing a special video for the symposium in Chicago, featuring stories by patients just like you. This is at the international level of awareness.
See the Vasculitis Awareness Channel on YouTube:
http://www.youtube.com/user/vasculitisawareness
We need YOUR help. Check out the Video Project Guidelines in the links on the YouTube Channel.
You are encouraged to prepare a 2-4 minute version of your story, and share that with the Vasculitis Foundation. These stories about real people with vasculitis will put human faces on this condition and increase public awareness.
Increased public awareness helps you too, because when more people become aware of this condition, then we expect more people will contribute to the cause. Either as volunteers or as financial contributors to research. We will eventually use this body of patient stories to help support grant requests to federal research programs and to major pharmaceutical companies, who provide funding for research into better treatments and an eventual cure.
It all starts with you. All ages welcome, all diagnoses of vasculitis should be represented, plus family and caregivers too! Don't be shy. Check out the YouTube Channel, and you will see other people telling their stories soon. We are in this together.
Now, to make this easier for you. I can help those of you who live in New Mexico.
I have access to the equipment, and will by appointment, meet you anyplace that is convenient for both of us to record your story. I will even travel to meet you in your home town if you are willing to meet with me. We can record your story as many times as it takes for you to feel comfortable with the results.
I cannot emphasize enough how dramatic the results of this video project could be, both to you, and to other patients who may see your story and know they are not alone.
For more information, check out the Vasculitis Awareness Channel on YouTube, and review the Vasculitis Foundation Video Project Guidelines.
If you are able and willing to record your own video, perhaps with the help of a family member, then please let me know you plan to create a video. You can also contact me if you want my help recording your story.
Don't want to do a video?
Then send me a nice photograph of yourself and a typed version of your story. I would like to know your stories anyway, and I can make sure it gets where it needs to go. We cannot publish all of the videos anyway, but there is a page on the Vasculitis Foundation website where your story can be presented. See this page for examples: http://www.vasculitisfoundation.org/patientstories
Thank you for your consideration.
Joseph Carpenter
Chapter Leader
Vasculitis Foundation in New Mexico
Saturday, February 11, 2012
Friday, January 20, 2012
YOU'RE INVITED: Meet me at Owl Cafe on Sunday January 22 at 1PM
WHO: I am meeting some new members. Mary, plus her son John who is age 14 and diagnosed with
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.
WHEN: Sunday January 22, 2012 at 1300hrs (1PM)
WHERE: Owl Cafe, 800 Eubank Blvd NE, Albuquerque, NM 87123-1200
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.
WHEN: Sunday January 22, 2012 at 1300hrs (1PM)
WHERE: Owl Cafe, 800 Eubank Blvd NE, Albuquerque, NM 87123-1200
NOTE: Turns out Deli-Berry is Closed on Sundays.
WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.
It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.
We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.
What awareness activities would you like to help organize, and then participate in? Speak up!
Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.
Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.
Come one come all to the Jellicle Ball, but leave your cats at home just this once.
WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.
It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.
We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.
What awareness activities would you like to help organize, and then participate in? Speak up!
Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.
Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.
Come one come all to the Jellicle Ball, but leave your cats at home just this once.
Wednesday, December 28, 2011
UNC Kidney Center Podcast: "Being there for Your Friend with Vasculitis""
UNC Kidney Center: Being There for Your Friend with Vasculitis
This podcast comes in the format of an audio interview with Dr. Ron Falk, UNC Kidney Center Director and Diane Shaw, who is both a Past President of the Vasculitis Foundation and also a vasculitis patient. The interview is conducted by Delesha Carpenter, PhD, MSPH.
It is intended for friends of patients with vasculitis to help them better understand this condition, but the overview information would be useful to a newly diagnosed patient as well.
You can also see related podcasts anytime at this web page:
Thursday, December 15, 2011
Happy Holidays!
I REGRET NOT BEING ABLE TO ATTEND THE DECEMBER MEETING TONIGHT
Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.
I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.
POSSIBLE CHANGE IN 2012 MEETING FREQUENCY
Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.
REACHING OUT FOR HELP IN 2012
I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.
For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.
Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.
The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.
RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES
How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.
First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.
Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.
So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.
IF WE BUILD IT, WILL YOU COME?
After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"
The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.
So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.
Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.
I am going to begin right now by arranging memberships for own my parents and siblings.
Wishing you a Happy Holidays,
Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation
Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.
I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.
POSSIBLE CHANGE IN 2012 MEETING FREQUENCY
Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.
REACHING OUT FOR HELP IN 2012
I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.
For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.
Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.
The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.
To become a member or make a donation now, go to these web pages:
Memberships: http://www.vasculitisfoundation.org/vision/join
Donations: https://contribute.vasculitisfoundation.org/donate/info
RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES
How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.
First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.
Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.
So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.
IF WE BUILD IT, WILL YOU COME?
After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"
The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.
So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.
Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.
I am going to begin right now by arranging memberships for own my parents and siblings.
Wishing you a Happy Holidays,
Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation
Wednesday, November 30, 2011
A better health care system now within reach | Physicians for a National Health Program
A better health care system now within reach | Physicians for a National Health Program
There has been a lot of debate about health care reform since the Patient Protection and Affordable Care Act was passed in 2010, and the debate continues.
On the one hand, many people feel that the new law, and it is the law of the land, imposes too much of a burden on the corporations that make American business go. In short, they believe reform is too expensive.
On the other hand, many people, different people, believe the new law falls way short of its original intention, which was to reform the healthcare system to save money and improve services. In short, they believe failure to reform is too expensive.
To be sure, some reforms are underway, but they mostly involve relatively minor changes to the existing private insurance system compared to a true renovation of the health care system.
For nearly two decades, since about 1993 or 1994, some physicians have been calling for a single payer healthcare system that promises to eliminate the 30% overhead that we now spend on Administrative costs. The idea is we allow doctors to focus on medicine, and establish a fair payment system that is less expensive for the patient, while at the same time improving the quality of services.
As patients and caregivers, any person associated with vasculitis has a personal stake in healthcare reform. Without reforms, you can look forward to another generation of overly expensive and complicated healthcare with plenty of denied claims for medically necessary procedures.
At this point I do not advocate one proposal over another, but I am interested in learning about all of the options. The least we can do is to make ourselves aware of the facts of the issue so we can act in our own best interests as citizens. Do not rely on the mainstream media to give you the information you need to know.
If you have not yet learned about this proposal, I encourage you to start with a recent article that gives a bit of an overview. Then you can explore the rest of the PNHP site to learn more about this particular option.
A better health care system now within reach | Physicians for a National Health Program
There has been a lot of debate about health care reform since the Patient Protection and Affordable Care Act was passed in 2010, and the debate continues.
On the one hand, many people feel that the new law, and it is the law of the land, imposes too much of a burden on the corporations that make American business go. In short, they believe reform is too expensive.
On the other hand, many people, different people, believe the new law falls way short of its original intention, which was to reform the healthcare system to save money and improve services. In short, they believe failure to reform is too expensive.
To be sure, some reforms are underway, but they mostly involve relatively minor changes to the existing private insurance system compared to a true renovation of the health care system.
For nearly two decades, since about 1993 or 1994, some physicians have been calling for a single payer healthcare system that promises to eliminate the 30% overhead that we now spend on Administrative costs. The idea is we allow doctors to focus on medicine, and establish a fair payment system that is less expensive for the patient, while at the same time improving the quality of services.
As patients and caregivers, any person associated with vasculitis has a personal stake in healthcare reform. Without reforms, you can look forward to another generation of overly expensive and complicated healthcare with plenty of denied claims for medically necessary procedures.
At this point I do not advocate one proposal over another, but I am interested in learning about all of the options. The least we can do is to make ourselves aware of the facts of the issue so we can act in our own best interests as citizens. Do not rely on the mainstream media to give you the information you need to know.
If you have not yet learned about this proposal, I encourage you to start with a recent article that gives a bit of an overview. Then you can explore the rest of the PNHP site to learn more about this particular option.
A better health care system now within reach | Physicians for a National Health Program
Thursday, November 17, 2011
Chapter Meeting Thursday, Nov 17th
I will be at Deli-Berry, 2520 Juan Tabo Blvd NE, at 6PM tomorrow. Anyone who wants to stop by and get caught up, you are welcome.
Any new patients out there? We can get you connected to resources provided by the Vasculitis Foundation.
Hope to see you all there!
: Joseph Carpenter
Subscribe to:
Posts (Atom)