NMVasculitis Annual Report

It seems kind of formal, considering the casual nature of most of our meetings, but I was asked recently to write something up summarizing who we are, and what we have been up to. I thought I might share that here so the NM members can also get a feel for what is going on with this chapter.

I have had a very busy summer, and I hope you all have been well.

This VF chapter has been in existence for about one year now, since our first meeting at Karla's house was held just a little over a year ago. So, think of this as an annual progress report.

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The Central New Mexico Chapter of the Vasculitis Foundation is known as NMVasculitis for short. We call it that because that is also our web address, http://www.nmvasculitis.org.

Founded in late summer 2008, by Joseph Carpenter and Karla Kollasch, the NM chapter is active with monthly support meetings as they spread awareness and grow the membership. Our regular meeting is held at the Albuquerque Grill, inside the Best Western Rio Grande Inn, 1015 Rio Grande Blvd. NW, Albuquerque, NM 87104.

We meet regularly rain or shine at 6PM on the third Thursday of every month. We also meet by RSVP only at 2PM on the Sunday immediately following the Thursday meeting. That Sunday meeting was added on an as needed basis to accommodate out of town attendees. If I know you are coming to town, I will also agree to meet a vasculitis patient anytime that is convenient.

We see between one and perhaps as many as six people at meetings. Usually I can expect to meet one or two new people every month or two. Most people find us through referrals from the VF, and also from people who find our website and blog. At least one was referred by the Mayo Clinic, who likely found out about us on the VF website local support page. Not everyone comes every month, but we keep holding meetings.

Keeping things simple seems to work best. We meet to share our experiences as patients and caregivers. We often try to combine our knowledge about the different ways to treat vasculitis. Talk about what works, and what does not work. Which doctors we see, and how we like them. The evening tends to resemble an informal social gathering. By the time someone leaves the meeting, I always feel like I have really met them.

The list of local doctors gets updated on our website as a permanent resource, which I update periodically as new information becomes available. This is pure gold for new patients, whose primary concern is getting to see medical professionals with the right training and experience. It is one of the most asked questions I hear, "Who are you seeing for this or that symptom, and how do you like them?"

We have developed a relationship with the nurses at the University of NM Hospital Outpatient Treatment Center, where medications like Cyclophosphamide and Rituximab are administered in the infusion clinic. The nurses have added VF brochures to their Patient Education Center. This amount to just a cabinet with health related literature, but now they also have the Vasculitis Foundation literature to pass out to new and existing patients. It is a simple step in the right direction. I also added a sticker to the brochure with local chapter contact information.

Our chapter has not yet hosted speakers, though I have spoken to a few doctors who have agreed to do this. Ours is a young chapter, and this is a learning process. I would like to grow the membership to a modest level, so that I can assure a decent attendance to make it worth the doctor's time.

Here are three general ideas for how to manage hosting speakers:

The first is simple, "Invite Your Doctor to Dinner." The members would pick up the bill for the doctors meal, and the doctor would either give a short talk, or perhaps just engage in a question and answer session with the attendees.

A second idea is to "host the meetings at the hospital" in order to make things very easy for the doctor. All they need do is come down for some lunch or refreshments, and spend a few minutes with the patients. This idea requires more coordination with hospital management, but it is on the horizon.

A combination approach I read about in a medical journal is referred to as a "Group Clinic" concept where the patients with similar diagnoses are scheduled at the clinic on the same day. Then, instead of just killing time in the waiting room, they adjourn to an adjacent room to participate in a support and awareness session. This also provides the hospital staff an opportunity to conduct shared training to standardize and reinforce approved best patient practices. One benefit mentioned was it gives the doctors a chance to hold a group Q&A which might get some patients to share information more freely than in the one on one clinic visit.

We are also expanding our efforts beyond meetings to include social events around town like going to the movies, or meeting for dinner. One way to accomplish this is by forming mutual partnerships with local businesses. The plan is to arrange for 2 for 1 coupons, and that sort of thing. The discount draws the members, and the business benefits from increased trade, plus they can choose to promote the feel good aspect.

Some local businesses already incorporate community fundraising into their business plan and will donate a portion of the related proceeds to a non-profit organization that makes the effort to get people into their business. For example, I am in preliminary discussions with the manager of California Pizza Kitchen (CPK) to arrange an event this Fall where 20% of all meal proceeds will be donated to the VF when accompanied by an NMVasculitis coupon. CPK restaurants do a fundraiser like this every month, at every location, so this could become an annual or semi-annual event for us, as well as for other chapters. The key to success will be promoting the event as widely as possible, so that will also be the biggest challenge.

There are lots of ideas. The bottom line is we keep meeting every month no matter how many people show up. Persistence is the key to letting the patients and caregivers know we are going to be here to fulfill the mission of awareness, education and support.