Valerie Slee: We had a great team in New Orleans for the AAAAI meeting this year; from all corners of the U.S.! My husband Andy and I boarded a choppy flight from Boston. Lisa and Jeff Sterling flew in from Boise, Idaho, Regina Rentz from Hartford, CT, Susi Jennings from San Diego, and Doris and Rick Hoopes came from Lincoln, NE. The lone driving pair, Wanda and David Hermann, brought their suburban full of TMS booth supplies from Brenham, TX.
We were fortunate this year to get our first choice of hotel, across the street from the convention center—a Hampton Inn and Suites. It was a great choice for us since there were no shuttles between the hotels. We were prepared on the first possible day to submit a request for a hotel, so that we could select an inexpensive and accessible one. It included a free breakfast buffet, too. There was an eye-catching piece of art across from the hotel--a tree trunk with a house perched precariously on top--the first sign that Hurricane Katrina had left a mark on the city. The structure was made of pieces of metal and other materials left by Katrina; a tribute to the strength of the people in this wonderful city.
We had a tight schedule: arriving at the airport, grabbing a cab, checking into the hotel, and preparing for an important meeting less than two hours later that was several blocks away. I walked to my meeting for the AAAAI Committee on Mast Cell Disorders, chaired by Dr. Cem Akin. It was a wonderful meeting; I felt I had a unique opportunity to express many of the concerns of the patients that have mast cell activation syndrome, but do not have the documented rise in known markers to confirm their diagnosis. Since we do not yet have a perfect, 100% foolproof marker for mast cell activation, it seems unacceptable to deny patients a diagnosis based on failure to have a rise in the existing markers. The emphasis at the meeting was to initiate a discussion about ICD-9 codes for all mast cell disorders. Last summer, I contacted the Medical Advisory Board about this issue, since we do not have appropriate ICD-9 codes for the mast cell disorders that are currently defined, including mastocytosis, and we certainly do not have anything for mast cell activation disorders.
We had an excellent discussion about the issue, and I could tell that the physicians were anxious to at least get the basic codes put into place, and then we could amend them to include mast cell activation disorder once the diagnostic criteria is written for it.The time flew by, and again I was impressed by the dedication of the physicians who work to find a cure for our diseases.
Andy and I had a quick dinner and then we met as a team to review who was going to be doing what at the conference. The booth team was headed by Wanda Hermann, and included David Hermann, Regina Rentz, and Doris and Rick Hoopes. The medical session team included Susan Jennings, PhD, Andrew M. Slee, PhD, Lisa Sterling, MS, Jeff Sterling, MBA, and me, Valerie M Slee, RN, BSN. Wanda and David had already arrived and set up the booth earlier. Our Technology Chair, Erin Cunia, had downloaded all the material that we usually print out onto CDs, saving printing and shipping costs. Wanda designed a clever jacket that held both the CD and the DVD on Mast Cell Activation Symptomatology. Physicians and other health care practitioners were delighted to have so much material in such a small package. The packets were a big hit. We gave away over 400 packets and scanned over 300 badges of physicians that requested more information.
Regina Rentz, Secretary, will take care of sending out a copy of The Chronicles and some of our new literature to them as a followup. In addition, TMS had a card in each of the delegate bags that was all about TMS, designed by Jody Bachiman that was clever and eye-catching. Our booth looked great as usual, with our TMS tablecloth, banner, and silkscreen showing pediatric cutaneous disease. Some physicians on our Medical Advisory Board have suggested that we start planning for a more professional back drop, perhaps a silk screen in three parts with information and photos. We will be considering this and possibly fundraising for this over the next year. We will do everything possible to attract attention to our booth, although we will never have the resources to take it to the terrific extreme that two pharmaceutical companies did with robots this year.
These robots walked, talked, danced with everyone approaching their booths, and when the robots met each other, sparks flew! It was tremendously entertaining. Doris and Rick Hoopes worked alongside Wanda and Regina, and did a great job of drawing people into the booth, engaging them in a discussion about mast cell disorders, scanning their badge to send more information, and sending them off with our packet. It was a positive team, and the booth was very busy as a result of it.
In the middle of the conference, Rick discovered there was a marathon around the convention center the next morning. Rick is a marathon runner who is always in shape. Without blinking an eye, he ate a spaghetti dinner, went to bed, got up and ran the full marathon the next day, and then showed up to work at the booth on time! What a guy! And—he has mastocytosis!
There were some wonderful scientific sessions this year, and we were able to divide them between us and cover quite a few of them. We will be writing more articles about the sessions we covered in future issues. In addition, we purchased the Virtual Meeting so we can have access to these sessions and many more after the conference, to maximize our learning experience. Because we were already Medical Delegates, courtesy of being a Lay Organization of the AAAAI, this cost only $99. We should get the link by the end of April.
The booth was open daily from approximately 9-3:30 pm and the scientific sessions were from 7-6 pm. Saturday evening we piled into David Hermann’s suburban and rode to a local restaurant, waited two hours for a table, another hour and a half for food, and half of us were not thrilled with the quality. The company, however, was superb, and we laughed all evening.
Sunday morning we met at the MarriottConvention Center for our TMS-Medical Advisory Board Breakfast. The breakfast was well attended with Dr. Catherine Weiler, Dr. Joseph Butterfield, Dr. Melody Carter, Dr. Mariana Castells, Dr. Cem Akin, and Dr. Anna Akin. Six other physicians wanted to attend, but had to decline because they had scientific sessions. One physician got lost, unfortunately, and missed the breakfast. We discussed TMS initiatives, and I gave them a printed copy of everything that TMS is currently working on.
We got involved in a discussion about emergency room physicians, and how reluctant they are to draw tryptase, and to order 24- hour urine collections for prostaglandin D2 and histamine metabolites such as n-methyl histamine, when patients present in the ER with anaphylaxis or symptoms of acute mast cell degranulation. The physicians expressed frustration because emergency physicians as a group do not seem to be open to instruction from allergists and immunologists.
We discussed ways to circumvent this problem. One issue is that ER physicians do not like to order (or are not allowed to order) any test that they cannot personally follow up on, and it is very difficult to follow up on a 24 hour urine test once a patient is discharged. We proposed, as a group, that patients with mast cell disorders should have collection kits for mast cell mediators at home (to collect 24 hour urine samples for prostaglandin D2 and N methyl histamine), and they should carry a prescription from their allergist/ immunologist ordering the tests to be done in the ER, along with the caveat that the ordering physician (allergist/immunologist) will follow up in the results with the patient, thereby relieving the emergency room physician from any responsibility for follow up, but still encouraging them to order the tests.
The problem then arose of where and how to ship the sample if one is not close to a major medical center that will take the specimen and ship it. This is not a problem for any existing patient of the Mayo Clinic, but for anyone else we have not yet come up with a solution. We are still discussing it. We all enjoyed this relaxed, informal time to exchange ideas with our wonderful Medical Advisory Board.
For me, the rest of Sunday was spent at scientific sessions, although I was starting to fade. I did not get to as many sessions as I had hoped. Susi Jennings on the other hand, was flying by me even as I was hoping that my exhausted body would make it another few blocks to the hotel for a brief rest. She was amazing—a real ball of energy as she interacted with physicians in poster and scientific sessions. Jeff and Lisa Sterling were making the rounds of the other booths, and making some connections that will be useful for us at our own conference in October. They also covered many of the scientific sessions on eosinophilic disease, since many members of their family have both eosinophilic disorders and mast cell disorders combined.
We also have other TMS members with this combination, who will benefit from what Lisa and Jeff learned. My husband Andy covered the more in depth scientific material, so that he could help me understand anything that I had questions about.
Sunday night the TMS team decided to see a bit of the touristy part of New Orleans. Off we went to Bourbon St. in the French Quarter—a unique experience indeed. It was loud, colorful, and bursting with energy! Lots of music, dancing, rhythm, and many people who were no longer aware of their surroundings. We walked quite a bit and had dinner where we sat outside on the balcony. We REALLY had a better view of the activity on Bourbon St! We finished our typical New Orleans dinners, then went to Café du Monde for coffee, cocoa, and beignets. It was a wonderful evening, and we all had a blast being together and enjoying the very colorful side of this amazing city! |
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Monday morning Lisa Sterling and I attended the Lay Organization Breakfast. Present were the outgoing and incoming AAAAI presidents, Sheila Heitzig, and all of our other lay organization representatives, whom we have been getting to know through the years and are quite fond of. The discussion this year was about accessing and coordinating care for patients who are at home, and the difficulty inherent in care coordination with so many specialists involved, and insurance companies also wanting to play a part. The official term for this is the medical home. The discussion was very intense, with lots of great ideas coming from the different lay organization heads, about how to help patients get a better quality of care. It was the best Lay Organization Breakfast that I have attended. We passed out a copy of our TMS initiatives, and left eager to work together on a new project called the Lay Organization Base Camp, through which we will join forces to work together on many issues that affect us all.
Soon after, Susi Jennings and I reviewed the posters on mast cells and mast cell disorders. We spent time talking to Dr. Joe Butterfield as we reviewed his poster. We met with Dr. Cem Akin to review the TMS 2010 survey, and to incorporate edits and suggestions that he might have. Dr. Akin was pleased with the survey, added a few suggestions, and he left to attend the remainder of the poster session. I paid one last visit to our booth and then left with Andy for the airport. Wanda and Dave stayed to take the booth down at the end of Monday, and drove the materials back to Texas. Susi Jennings stayed until Wednesday so that she could attend sessions on Mast cell disorders that took place on Tuesday. This was an amazing conference, the best I have attended. There was more interest overall on mast cell disorders, there were more posters on it, the doctors were very animated and interested, and I could see that what we were doing is working! We need to keep it up!
-- Valerie M. Slee, Board of Directors, Chair
Susan Jennings, PhD: Attending this meeting with the TMS team was a wonderful experience for me on many levels. It gave me the chance to get to better know people I met briefly at the 2009 New Jersey TMS conference, and to meet and get to know others who were not at that conference. We had a fun and lively group and spent several evenings together experiencing a bit of what New Orleans has to offer. Being “new kid on the block”, I appreciated how warm and welcoming our TMS group was to me.
Attending the scientific sessions gave me the opportunity to brush up on some of the advances in allergy, asthma and immunology in general, and more specifically, in mast cell biology and anaphylaxis. This was a huge meeting, however, with many sessions running concurrently, so I am looking forward to accessing the Virtual Meeting when it becomes available. I was pleasantly surprised at how often the subject of mast cell disorders (both mastocytosis and mast cell activation disorder/syndrome) was brought up at various points during the presentations. It showed that all the hard work by TMS and the very dedicated doctors who are putting a focus on mast cell disorders (as well as others who are passing the word) is truly paying off.
Other than learning as much as I could, I directed my efforts to making others aware of mast cell disorders. Whenever it was related to the topic, I made the point of drawing attention to the subject during the sessions and also mentioning the TMS booth, so people could get more information. I tried to keep TMS materials with me, but the doctors I spoke with were so interested that I had to go back and get more from our booth! For every doctor who becomes aware of the advances in the field of mast cell disorders (or even aware of the different forms that exist in the first place), the chances increase that a patient somewhere will be helped. The more doctors are thinking about mastocytosis and discussing it, the more likely advances in the field will be made. I was very happy to be able to play a small role in spreading the word! There seemed to be a lot of traffic at our booth and our hard working group did a fantastic job engaging conference attendees and getting them to stop long enough to collect the TMS information.
The TMS Research committee worked hard to get a version of the 2010 Patient Survey ready for Dr. Cem Akin to review at the conference. It was especially helpful to have a face-to-face meeting with him. As I am writing this, we are still spending quite a bit of time finalizing the survey so I will leave a review of the sessions I attended for a future Chronicles article. I will say that attending this meeting with all of our TMS representatives truly reinforced my motivation to help further the goals of TMS. I am very excited to be a part of this organization.
-- Susan Jennings, PhD, Research Committee
Rick and Doris Hoopes: Our third year of helping at the TMS booth for the AAAAI was as fabulous as the previous conventions. We are thrilled by the number of doctors who want more information and we are appreciative of the support at the booth from our medical advisory board, researchers, and presenters. For example, Dr. Catherine Weiler happened to be at our booth when another physician had a very specific medical question; Dr. Weiler stepped into the discussion immediately. This sort of instant response would not be possible without TMS’s presence at these conventions. The booth received a lot of attention from St. Louis, Missouri residents, and we learned that George Washington University in St. Louis places a heavy emphasis on mastocytosis in their curriculum. The word is spreading!
As Val mentioned, Rick took advantage of Sunday’s perfect spring day and finished the Mardi Gras Rock ‘n Roll Marathon in 3:27:03 for 9th place in his age group and in the top 10% overall among the 3515 finishers. We left New Orleans convinced that TMS is meeting our mission of education by participating in these conventions, and we are pleased to play a small part.
-- Doris Hoopes, TMS Member
Regina Rentz: As Val has reported so eloquently, TMS’s participation in the conference this year was a great success. I’ll let everyone else tell you all the details, but I wanted to mention one thing that struck me.
I last worked the booth at the Philly conference two years ago, and what I noticed this year was the tremendous increase in both awareness of and interest in mastocytosis among all the doctors. Two years ago when we asked a doctor if he had any patients with “masto”, many of them brushed it off. “No,” they would say, “it’s a very rare disease.” Only two years later, the majority answered, “Yes”. Many doctors specifically sought out our booth because a speaker had mentioned it.
I also want to note the tremendous job Doris and Rick Hoopes do at these conferences. Doris is out in the aisles pulling people in and she has such a way about her that when visitors stop to talk they are laughing and so are we. We had crowds around most of the time, while many of the non-profit booths sat empty. Thank you, Doris and Rick. Please keep on coming!
I’m very glad I attended the conference and got to see the tremendous increase in awareness among the doctors. TMS should continue to push to attend as many medical conferences as possible, branching out into as many allied specialties as we can. TMS really does make a difference.
-- Regina Rentz, Board of Directors, Secretary
Lisa Sterling: Attending this AAAAI Conference in New Orleans was an eye opening and educational experience. Although I have attended many technical conferences, I was impressed with the wealth of knowledge presented as well as the eagerness of attendees to absorb as much information as possible.
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I was fortunate to be both a Medical Delegate as well as an exhibitor. The TMS Medical Delegates were able to compare schedules and select a broad range of medical sessions to attend. After TMS receives the AAAAI virtual conference material, the medical delegates will compare notes and summarize information obtained in the sessions attended.
In the exhibition hall, my husband, Jeff Sterling, and I visited dozens of booths. We gained insight about products that might be useful to mast cell disorder patients, but we also disseminated information about TMS. In upcoming months I will be following up with several exhibitors to determine how we might work together for the benefit of TMS members and mast cell disorder patients in general. Examples of some of the products that might be helpful include cotton clothing with no chemical processing or irritating seams, nasal screens, and fragrance-free laundry detergent for sensitive skin.
Attending the Lay Organizations meeting was exciting! The enthusiasm of other patient support organizations was inspiring. We were able to share ideas, and with the implementation of the new base camp program, we will be able to collaborate with other groups on fundraising, education, legal and many other issues.
Many thanks to each of the TMS AAAAI attendees for contributing your time and talents in support of the TMS mission!
-- Lisa Sterling, Board of Directors, Fundraising Committee, Chair
Wanda Hermann: In 2005 TMS had an opportunity to attend the AAAAI Conference for the very first time, which was held in San Antonio, Texas. The TMS budget for the conference was minimal. I personally wanted to attend the conference because it was in Texas and it would be cost effective to send me rather than to fly people in. I scraped together the furnishings and materials (even the carpet) so that TMS would not have to pay the cost of renting and shipping. I loaded everything in my suburban and drove to San Antonio. Our booth was in a great location at the conference hall. I really didn’t know what to expect--my first time attending TMS’ first time attendance. We had some people stop by our booth only to inquire, “What is mastocytosis?” Others seemed to know about mastocytosis but were not interested. However, the foot traffic was good and we were excited about the number of people who picked up our information. I left San Antonio with an overwhelming feeling of success and was excited to attend the AAAAI the following year.
In 2007, I attended another AAAAI Conference in San Diego. We were not able to bring the furnishings because of the location and our budget was still small. I carried all our material in my super large suitcase (this was before the airline baggage fees.) My suitcases weighed over 100 pounds. At this conference I noticed a difference; more doctors were looking for us, wanting our information. They were not just trying to figure out who we were. They knew who we were and wanted us to help them by giving them our information. I left San Diego convinced that it was important that TMS attend more medical conferences. So in November of 2007 TMS attended the American College of Allergy Asthma and Immunology in Dallas, Texas. Each year and each conference that I attend I see the difference that we are making. I wanted to be able to bring the material to New Orleans this year. We rented a minimal amount of furnishings and when I arrived in New Orleans at the conference center, I thought I was going to have a problem carting the booth material into the center. After some obstacles David, Rick, Doris and I set up the booth and we were on our way. For me it was time for a rest after a day of traveling. The first day is always the busiest.
There were times when the doctors were coming to us in droves, looking for us to get information after a presentation about mastocytosis or the mention of mastocytosis along with TMS. They commended us for all the work we were doing to make them aware of the disease. They were going back to their offices with the contact information provided by TMS, to the research doctors, and also were sending their patients to TMS for support and information.
TMS membership has increased by 100 members in one year. We want to continue to attend these conferences and add more conferences to attend. With additional funding and volunteers, we will be able to this. We are helping the doctors find answers and also my hope is that through awareness, this will encourage more research.
These conferences cannot be attended without the TMS team. From the beginning Val Slee, as the contact person for the AAAAI, made all of the arrangements for us to go. Jody Bachiman created the drop cards for the doctors’ bags. These drop cards were given to all doctors who attended; an advertisement to attract the doctors to our booth. Jody created these cards for a couple of the conferences. The cards have to be eye-catching and the wording has to entice the doctors to come to our booth.
The TMS Research Committee, (Nancy Russell, David Mayne, Susan Jennings) worked around the clock to pull together the research articles for the Research CD that we passed out; it was well received, especially by the students. After the articles were gathered, Erin Cunia compiled and formatted the articles and copied them to 400 CDs. She ships them to me and I take them to the conference. Erin does this 3—4 times a year for the different conferences that TMS attends. She puts in many hours on this project. I was excited to find a CD cover that we could put both the Symptomatology DVD and the Research CD in one package. My sister, Pat Conner, and I spent a couple of days putting them together and attaching labels. We wanted to try and go paperless this year and that was well received by the doctors. We took a minimal amount of the paper form of the “Special Edition” and Erin put a PDF form of the “Special Edition” on the CD along with the Research Articles.
We still passed out a few of the paper form but we passed out all of the CD/DVD packets. By doing this, we save on printing and shipping.
I hope to see articles from Susan Jennings, Val Slee and Lisa Sterling from this conference. Susan has a tremendous amount of energy and I am mesmerized by her knowledge. Susan and Lisa both were telling the doctors at the sessions to go by the TMS booth. We had a number who stopped by and told us they saw Susan or Lisa in one of the sessions and came by the booth because they had suggested it.
Not only does Val go to these sessions to bring back information to the members, it is a tool to keep herself updated on all the medical information out there. It is a hard job for one person to handle but Val does it, until she can find someone to share the job with.
Doris and Rick Hoopes have been devoted attendees of the AAAAI conference for several years. They feel it is so important that TMS be at these conferences that they ask not be reimbursed for their expenses. Rick and Doris are a wonderful asset for TMS; to have them to lean on. The booth was manned by Rick, Doris, Regina Rentz and me.
There were times when all of us were talking to different doctors at the same time. It is hard to fathom, but at times there were doctors waiting in line to talk to us and scan their cards! Regina now has the task of the followup mailing to over 400 doctors that we have made contact with at the ACAAI and the AAAAI.
We also cannot forget the husbands. Andrew Slee is always next to Val. She will point him in the direction she needs help and he is always there to assist in any way he can, devoted to the cause. Jeff Sterling was our navigator when we weren’t using Samantha (GPS). My husband David was there to do the driving and the loading, unloading and running errands.
This was a great conference. When I loaded up the suburban on Wednesday afternoon with all of the material, I wondered how it would turn out. I am so glad I was able to experience this. Next year it will be in San Francisco, California. We are already making plans for it. Thanks to all who supported TMS in helping us attend these conferences. I wish all of you could experience this one time. It is really a great feeling of success.
-- Wanda Hermann, Board of Directors, Treasurer |
