May is Vasculitis Awareness Month

What can you do?

CAN you talk? Then tell everyone you meet about the Vasculitis Foundation. What it is, what they do, and why they should contribute.

CAN you walk, roll, hop, or crawl? Get your own Vasculitis Foundation T-Shirt and wear it proudly anytime you are out and about. When people ask you what it is, tell them. If you attend a fun run, wear your Vasculitis Foundation gear instead of their T-Shirt. You can wear that later. When people ask you why, tell them.

CAN you drive? Consider putting a Vasculitis Foundation bumper sticker on your car. Spread awareness while driving around town. Give them to your friends and family as well.

CAN you involve friends and family? When they ask if there is anything they can do, and you usually say no... stop telling them no. Instead tell them to consider making a contribution by becoming a member of the Vasculitis Foundation, then donate, volunteer, and advocate for vasculitis patients every day.

You CAN tell people about vasculitis. The power of one voice is stronger than you may know. Tell people about vasculitis everywhere you go. Get some brochures from your chapter leader and pass them out at your doctors office, and give them to people you meet. You tell one person, then they mention it to others, and awareness spreads like a virus. Together, we can make a difference.

You can get your Vasculitis Foundation Official T-Shirts, bumper stickers, and other gear from the VF Store: https://contribute.vasculitisfoundation.org/store

May Chapter Meeting Coming Up on May 12, 2012

This is Vasculitis Awareness Month. What to talk about it? Why not show your awareness by coming to a chapter meeting!

Every second Saturday at 3PM we meet at: 

Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque, NM. MAP 

For more information:

Contact your chapter leader, Joseph Carpenter. He really would like to hear from you anyway. Awareness is better when shared.

Joseph Carpenter
Send Joseph Email
or use the Call Me widget in the chapter blog:
http://nmvasculitis.blogspot.com/

Additional Educational links and resources available at:
http://www.nmvasculitis.org
(Moving soon - to be incorporated into http://www.vasculitisfoundation.org/

Attend the 2012 Vasculitis Symposium Webinar

 

Attend the 2012 Vasculitis Symposium Webinar  Knowledge. Community. Power. Saturday, April 21, 2012 I am pleased to invite you to attend the 2012 Vasculitis Symposium via webinar.   The webinar will offer some of the sessions from the 2012 Vasculitis Symposium. Please note, you will need to register for each session you want to attend. MORNING SESSION:  8:30 a.m. - 10:00 a.m. CDT  Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/694259583 What Is The "State of the Art" for Treatment of Vasculitis?  Peter A. Merkel, MD, MPH  Division of Rheumatology, University of Pennsylvania  What Does The Future Hold That Is Even Better?  Gary S. Hoffman, MD, MS, Center for Vasculitis Care and Research, Cleveland Clinic  The VCRC Vasculitis Illness Perception (VIP) Study: Illness Perception,  Fatigue, and Function in Systemic Vasculitis  Peter C. Grayson, MD, Boston University Vasculitis Center Title: Morning Session Date: Saturday, April 21, 2012 Time: 8:30 AM - 10:00 AM CDT MORNING BREAKOUT SESSION:  10:30 a.m. - 12:00 p.m. CDT We are offering three breakout sessions. Please choose one session to attend. Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/298475287 Dr. Phillip Seo, The Johns Hopkins Vasculitis Center, and Professor Wolfgang Gross, University of Luebeck, Clinic for Rheumatology, provide an overview of Vasculitis in general, including understanding treatments, tests and procedures, and medications and side effects. Title: Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1B: Small Vessel Vasculitis Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/315413312 Small Vessel Vasculitis [Churg Strauss syndrome, Granulomatosis with polyangiitis (Wegener's) and Microscopic polyangiitis] Title: Breakout Session 1B: Small Vessel Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1C: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/817031297 Dr. Kenneth J. Warrington of the Mayo Clinic discusses Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis. Title: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/942372952 Dr. Antoine G. Sreih of the Rush University Vasculitis Clinic and Dr. Curry L. Koening of the University of Utah discuss Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis). Title: Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT AFTERNOON SESSION:  12:45 p.m. - 1:45 p.m. CDT Afternoon Session: What is remission? Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/153226191 Hear Dr. Carol A. Langford of the Center for Vasculitis Care and Research discuss what remission means to a vasculitis patient. Title: Afternoon Session: What is remission? Date: Saturday, April 21, 2012 Time: 12:45 PM - 1:45 PM CDT AFTERNOON BREAKOUT SESSION:  2:00 p.m. - 3:00 p.m. Breakout Session 2A: Vasculitis Fall-out   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/988828185 Dr. Philip Seo of the Johns Hopkins Vasculitis Center explains the fall-out associated with symptoms and treatment of vasculitis. Title: Breakout Session 2A: Vasculitis Fall-out Date: Saturday, April 21, 2012 Time: 2:00 PM - 3:00 PM CDT We hope you will be able to join us. Sincerely, Joyce A. Kullman Executive Director

Are you going to Chicago next week?

As I prepare to go host our chapter meeting today, I think the main thing on my mind is all the hard work taking place to grow the Vasculitis Foundation so that patients everywhere can benefit from improved education awareness and research programs. There are projects going on behind the scenes to improve education services for patients, and bring you into closer contact with other patients to share support.

The Vasculitis Foundation is the number one private fundraising organization for research into better treatments and an eventual cure for these horrible conditions. The more I learn about the Vasculitis Foundation, the more I am determined to help.

You want a cure? Then one of your best bets is Donate to the Vasculitis Foundation.

The best way you can help immediately, is by becoming a member. As your friends and family to become members of the foundation, and then be sure to renew your memberships. Consider contributing again when you can. Almost all funds go towards funding the research. If you like, you can even specify which programs you want your contribution to support.

Learn more about ways to contribute at the Vasculitis Foundation website:https://contribute.vasculitisfoundation.org/getinvolved

The second thing on my mind is the upcoming Vasculitis Foundation Patient Symposium next week in Chicago.

There are actually two main Vasculitis Symposia for patients this year: 

Chicago on April 21.

 Atlanta on July 21.

Check out the Vasculitis Foundation website for more information and to make arrangements to attend.

VF ANNOUNCES LOCATIONS FOR 2012 SYMPOSIA LOCATIONShttp://vasculitisfoundation.org/node/4591

These are outstanding opportunities for new patients especially to learn more about vasculitis, and also to meet other patients face to face. How long have you been struggling with your condition alone. Nobody else really gets it, right? Some people are understanding, but they can only support you. Others wonder when you will get better, as if they do not understand the meaning of the word, "incurable condition."

Vasculitis is very rare, but at the symposia, you have a chance to be among several hundred patients and caregivers with issues very similar to your own. It is a rare opportunity for sufferers of these rare conditions.

The other benefit is getting to attend presentations by some of the world's foremost vasculitis researchers and clinicians. No doctor knows it all, but these people know than most about vasculitis: How to diagnose it, and how to treat it.

When better treatments are developed the Vasculitis Foundation will be right there to report it. When a cure is found, the Vasculitis Foundation will be there to ring that bell and let the world know.

Become a member, and consider attending one or more symposia to get connected and learn more about these conditions.

And if you feel like talking about other ways to gain support and spread awareness locally, come meet me at one of the monthly meetings.

I will be at Deli-Berry on the second Saturday of every month at 3PM. DeliBerry is located at 2520 Juan Tabo Blvd NE, Albuquerque, NM. 

You dont need a reminder from me. Mark your calendars or subscribe to the chapter Google calendar so it updates automatically when I add or update an event.

Hope to see you there.

NM Vasculitis Foundation 2012 Spring Events

I have been helping with a few projects for the Vasculitis Foundation, including the two YouTube Channels for Education and Awareness, advising on the Vasculitis Foundation Video Project, and putting in a lot of time with some behind the scenes changes related to improvements to the VF website that are not public yet.
Consequently, you guys have waited for me to get things started this year. Your wait is over. I am setting up some events in 2012 and you are invited to participate. I hope you will come. I also hope some of you will help me run these events to make them more successful.

At any event, be prepared to tell your story anytime people ask about vasculitis. I can arrange for a news reporter to interview one or more of you if I know for sure a patient will step up to be a voice for us.

Vasculitis Foundation Video Project

I say again, patients and caregivers, please consider telling your story on film for the Vasculitis Foundation Video Project. The better videos will appear on the VF Awareness Channel on YouTube. This is a powerful way you can share your story for many good reasons. The bottom line is increased awareness translates into increased funding for research. Your story may also help another patient to know they are not alone. More information, plus links to the Video Project Guidelines, on the YouTube Channel here: http://www.youtube.com/user/vasculitisawareness

The video project has no deadline. However videos submitted prior to the end of February will be considered for a professionally edited wrap up video to be shown at the two symposia this year in Chicago (April 21) and Atlanta (July 21).

If you do not want to be on video, then you can send a photo of yourself along with a typed version of your story for publication on the Patient Stories page of the Vasculitis Foundation website: http://www.vasculitisfoundation.org/patientstories

Also, remember that I have offered to help film patient and caregivers videos. Contact me if you are interested.

Party for the NM Vasculitis Kids

We have a number of kids in our chapter who range in age from 11 to 19. There are also a couple of kids who have not yet connected with our chapter officially. I would like to connect with those families and get the vasculitis kids and their parents together for some kind of fun party this Spring. Like Putt Putt, or Bowling or Hinkle or something like that sometime after the weather warms up a bit. We would outfit the kids in Vasculitis Foundation T-Shirts so they will be promoting awareness while they have a good time and get to know one another.

If it goes well, we could get them together again to go to the movies sometime. Nobody understands juvenile vasculitis issues like another kid who has these conditions.

You can suggest a date by contacting me now, or I will pick a date soon and let you know. I will try for a time that works with all the school schedules.

Pot Luck Dinner Party for all New Mexico Patients and Caregivers

I have a plan to entice you all to come enjoy some good food and good times with each other. We can put together a simple pot luck dinner party for all the patients and caregivers.

I have a safe place in mind where we could let the kids go downstairs to hang out young person style, and the grownups could stay upstairs and hang out older person style. Maybe make it an annual event during awareness week in May? Just an idea at this point...

If it goes well, we could do it again in the Fall, like late October to mid-November. I think the Thanksgiving season is a special holiday for vasculitis patients.

Again, you can suggest a date, or I will pick one. Probably a Saturday evening in April or May. If you send your blackout dates, I will try to accomodate you as much as possible.

Run for the Zoo in May with the "Vasculitis Foundation in New Mexico" Group

I would like to get group together for the Run for the Zoo event on Sunday, May 6th, 2012. This is a city wide event with lots of media exposure.

We all know vasculitis patients suffer from fatigue, and so YOU may or may not want to take a One Mile Fun Run/Walk yourself. However....

You can recruit your able bodied friends, family members, coworkers, neighbors, etc. to walk on your behalf. Then we can put together a larger group to walk together carrying a vasculitis banner or maybe some flags? Everyone you get to do this on your behalf could also become a member of the Vasculitis Foundation and get an official 2012 Awareness T-Shirt. Money from those memberships helps to fund vasculitis research, so ask them to join the VF today!

More info here:

http://www.bioparksociety.org/runforthezoo/

I can get at least twelve people from my family to do this on a Sunday. If I put this out to my basketball teams and their families, then I just might get a few more people on board. How many people can you get to show their support for you?

We would get lots of exposure just being around thousands of other people. Contact me if you want to help me organize this event. We would register as a group, and have to pay the registration fee. The proceeds benefit the Albuquerque BioPark.

I will have more information for you on this within a day or two. If we act soon, there are reduced registration fees through Monday February 20th.

Call your "recruits" today and get them to pledge to walk on your behalf! Send me Email as soon as you know you have some people who can do this so I can add them to our groups list.

2012 Vasculitis Foundation Symposium in Chicago on Saturday, April 21st

Details here: http://www.vasculitisfoundation.org/2012chicagosymposium

2012 Vasculitis Foundation Symposium in Atlanta on Saturday, July 21st

Details here: http://www.vasculitisfoundation.org/2012atlantasymposium

The Symposia this time are broken into two one day events. This is a jam packed opportunity to gain knowledge about vasculitis, and rub elbows with other patients who know what it is really like.

I plan to attend the Chicago Symposium, and then stop by the main office in Kansas City to do some pow wowing after the conference. I am not sure yet about Atlanta. The key for me is I either drive or take trains, but not planes. If you want company on the trip, I will be leaving on the Amtrak Southwest Chief probably the Thursday prior to the event in Chicago. I will let you know once I finalize my arrangements.

T-Shirt and/or Poster Art for Vasculitis Foundation in New Mexico?

There is no deadline for this, but it would be nice to have something done in time for May. I have long thought it might be fun to design a T-Shirt for our chapter awareness efforts. I wonder if any of you are artists? Would you like to help me design some artwork for a T-Shirt, and/or a poster that we can use in conjunction with other Vasculitis Foundation in New Mexico events? It does not have to be perfect, but it should reflect who we are in relation to our state and our shared connection through vasculitis.

If anyone would like to participate in these events, or help me plan and organize these events, please contact me, then we can discuss details at a chapter meeting or we can arrange to meet for breakfast or lunch sometime. Call me.

NM Vasculitis Foundation Chapter Members - YOU ARE INVITED

WHO: All members of the Vasculitis Foundation in New Mexico


WHAT: NM Vasculitis Meetings (2012)

WHERE: Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque NM

WHEN: Chapter Meetings in 2012 will be on the second Saturday of every month at 3PM. I plan to get there at 3PM, then will stay as long as we have something to talk about. If nobody else shows up, I will leave at 4PM.

I am also available by appointment. Contact me to set up a good time.

See the chapter calendar for map links, etc.

Saturday meetings for 2012? What do you say?

I am looking to move chapter meetings to weekends in 2012. My schedule during the week is not allowing me to keep up the Thursday meeting time, and to be honest, not many people showed up regularly. A few came several times, and we had some nice visits. I look forward to seeing you guys and hearing how you are doing.

Would you like to meet on Saturday afternoons? Deli-berry is not open on Sundays, and I prefer to keep that day for myself anyway. What remains is your feedback.

Which is best for you on a Saturday?

• Early afternoon
• Late afternoon
• Early evening

Maybe Saturday meetings will also be easier for our younger members as well. In addition to our older patients, there are at least three now under eighteen, and one of you is just nineteen. Perhaps the younger crowd could get to know each other, and invite others who they meet at the docs office, etc.? Besides, what kid would not want a frozen yogurt on a Saturday?

Once I hear back from you, I will use that feedback to make up a schedule for the rest of 2012.

• Definitely at Deli-berry. 
• Probably once a month on Saturdays.
• Most likely the second Saturday of every month. 
• Consider that tentative until I hear back from you.

Hopefully more of you can make it to a Saturday meeting. If not, then I am also available by Telephone, Email, Skype, Google Chat, and Magic Mirror. (Just seeing if you were you paying attention.) Seriously though, I will be happy to meet you by appointment if you cannot make a meeting and need to talk about whatever, or just want to have lunch sometime. You are not alone.

I also look forward to hearing your stories, or reading them if you do not do a video and choose to send me a photo with your written story instead. Not a good writer? Worried about the spelling? Do not fear, I will help you with that too if you want help. Let me take notes or record the audio while you tell your story. I can help you get it down on paper, then we can work together to make it a good one before you share it.

Check out the Vasculitis Foundation Video Project to promote awareness. You can learn more about that on the Vasculitis Foundation Awareness YouTube Channel.

Vasculitis Foundation Video Project

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