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
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