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The Mastocytosis Society 2007 Annual Meeting

Greetings from back in New England after 4 wonderful days in Texas! It has taken me longer than usual to write this; because I succumbed to germs I must have picked up on the plane, and have been down flat with a fever and throat infection. Wow — was I ever impressed with Texan hospitality! Wanda and the Texas Support Group outdid themselves, absolutely presented the most terrific conference ever, and everyone we met in Texas was warm, hospitable, and so very helpful!

Each year I start the same way, but truly, it was an amazing experience, and the accolades that we got from the doctors, both old and new to us, continue to pour in. Before most of us even got there, there was drama unfolding. Jody Bachiman, our PR Chair, is an employee of Time Warner Inc. She begged for donations of any kind to support our walkers and our conference attendees, and boy, did Time Warner come through! Donating to the Walk-a-thon, they sent 1,100 pounds of donations on Wednesday!! It took a forklift to get the box off the truck, and then we had to unpack and sort all that wonderful stuff! Suffice it to say that no one, absolutely no one went home empty handed! It was a lot of extra work, but it made for a lot of laughter and extra fun, too. Jody and Time Warner — we thank you!

My husband and I arrived with my parents on Wednesday at 5:30 to lovely weather. While it was in the low 80s, there was very little humidity, so it was quite comfortable. We arrived at the Hilton Garden-Houston Northwest, and Wanda needs to be commended for her selection of this hotel. Rita and I can attest to how difficult it can be to find a good hotel that meets all the tricky mast cell disorder criteria — we drove all over New England last year looking for one! But this year, The Hilton Garden Inn- Houston Northwest was terrific. The rooms were lovely, the bathrooms immaculate, and the staff literally could not do enough for us — the front desk staff, the housekeeping staff, and the banquet/event staff. The event coordinator Roseanne even went so far as to remove all scented cleaning products from the housekeeping carts for the duration of our stay! The location was excellent, with restaurants and pharmacies, groceries, Sam’s club, etc., within walking distance or short driving distance. Parking was free. This was the perfect location for our conference.

Thursday morning, the Board convened for a breakfast meeting to get organized and assign jobs. Then, some of us (Rita, Jim, Andy and me, Lisa and Kevin Kenny, and Dr. Luis Escribano) left in a van to meet Dr. Srdan Verstovsek at MD Anderson Cancer Center, and see his mast cell lab and clinical areas there. We also planned to meet his nurse, Ann Richie, and Nancy Russell, who are in the department of Integrative Medicine at MD Anderson. Both are members of our Research Advisory Committee. But first, we had to get there. Now, for those of us not from Houston or Texas, they have a rather unique highway system there consisting of a highway, and then a road that runs next to the highway called a feeder road, or access road. Both travel in the same direction, giving you two opportunities to…get lost. But, we were not worried, because Kevin had a GPS system called Hertz “Never Lost.”. That name turned out to be the highlight of Dr. Escribano’s visit, because one hour and thirty-five minutes later, as we were hopelessly lost, he kept calling out, “Never lost —ha! We need to rename this Always Lost!” We finally found our way with my brother, Geoff Giacco, an epidemiologist at M.D. Anderson, guiding us by cell phone, and then literally waving us down the street and into the parking lot

M.D. Anderson Cancer Center was an amazing place, with building upon building, all of them dedicated to taking care of such very sick patients. We met up with Ann and Nancy, both of them delightful and so welcoming, and also a physician who trained Dr. Verstovsek, whose name sounded like Teggy. (I could not get his name off his lab coat, because he had Dr. Verstovsek’s lab coat on!!) First, we toured the mast cell clinical laboratory space. The very encouraging information that we received here is that the space has doubled in size in the past few years due to the enormous interest in mast cell diseases. Then, we toured the Alternative Medicine and Therapies department, part of the M.D. Anderson program in Integrative Medicine, where patients can receive massage therapy, acupuncture, aroma therapy, and other adjunct therapies to help with the side effects of chemotherapy, and to help with dealing with the many challenges of their diseases. Dr. Verstovsek treated the Board to a lovely lunch, and then we toured his Leukemia unit, which is where he also treats patients with mast cell diseases. It includes a fast track lab, which can get blood draws and bone marrow biopsy results back much faster than if the patient was sent to the regular hospital diagnostic center. The whole atmosphere of the center was one of quiet elegance and relaxation, with lots of fish tanks and water displays to sooth the spirit.

Back into the van we went to rush back to the hotel to prepare for the Walk-a-thon. Wanda and David Hermann, Regina Rentz, Jody Bachiman, my parents Seb and Ty Giacco, Lissa Giacco (my sister-in-law), Cindy Noonan and her friend Amy, Debbie Woltmann, Pat Conner, Michelle, Todd, and Gio Lamanna and Janice Poore were all busy working with our many volunteers on either preparations for the Walk-a-thon or the conference. My brother Geoff and his wife Lissa did the Park advance work, walking the route, and meeting with the park contact that Jody had been speaking with. The park with huge, lovely, and…busy! Even with maps, it was hard to know exactly where our pavilion was, but there was Jody, already signing up the walkers! We had many, many people participate in the Walk-a-thon in myriad ways-sending in donations themselves, sponsoring a walker, sending in donations, and showing up to walk. Drs. Theoharides, Akin, and Escribano walked along with us. We had a robust group of 30 walkers and many volunteers, who together have brought in over $14,000-and the money is still rolling in! We are hoping to reach the $15,000 mark! The First annual Walk-a-thon was a success for all those who participated. We are hoping next year to get 100 % member participation, which would mean much more money for research and education! Every member with a mast cell disorder or caregiver should be participating in fundraising opportunities like these, especially since participation can be done from home!

After the walk itself, we enjoyed water and soft drinks provided by Coca Cola and transported by Janice Poore and family, and lots of salty snacks and candy provided by a $100.00 donation given to Jody specifically for this purpose. We took time to meet the other walkers, and exchange information, and we all made many new friends. It was a great way to launch the TMS Annual Conference!

The board and many volunteers went back to the hotel, grabbed a very quick supper, and then we started setting up for the next day. Many hands made for light work! Many of the conference attendees came down to help, and we had a wonderful time with everyone pitching in to help. Everyone was laughing and joking around as we worked hard to set up the conference room, the TMS store, and the raffle tables. Wanda and her friend Debbie Woltmann had made lovely autumn centerpieces with Texas Stars in the middle. There were amazing donated baskets this year, and lots of great theme baskets. The TMS store, under the direction of Wanda's sister Pat Conner and Debbie, had a wonderful selection of new black collared polos, terrific yellow and also white tee-shirts with our new slogan, "Mast cells-too much of a good thing" on the back with a wonderful picture of a mast cell, our new TMS holiday cards, lighthouse jewelry, DVDs of past conferences, and wonderful TMS teddy bears hand made by Patti Smith. The Holiday cards were a new initiative this year, and they went over very well. We chose a non-denominational photo of a holly bough poking through snow, with a message that simply says "Peace." Inside the card, it states that "proceeds from the sale of the card benefit The Mastocytosis Society…."... Cards continue to be on sale on our website in the Store, and a package of 10 cards is $15.00. They are lovely! We are challenging every member to buy one pack of cards to support this fundraiser. To order your holiday cards, please contact Wandak@broadwaves.net.

Friday morning came way too fast, and registration was busy with Regina and her registration crew checking everyone in beginning at 8 pm. We had lots of time to socialize over the continental breakfast, except for Jody, who was busy trying to get all of the speakers' power point presentations onto her computer! This year, Wanda worked incredibly hard to produce the most professional program that we have ever had. It was in a three ring binder, and each speaker had their own section identified by a printed tab, and that section contained their entire power point slide presentation, with space alongside each slide to take notes as the speaker talked. Especially when a speaker had a bit of an accent, having the slide right in the program made the whole presentation much more understandable. (Note: as a special promotion, the first people to buy DVDs of this meeting will be offered the program with the slide presentations while supplies last, so hurry and order your DVD of the 2007 TMS Annual Conference today to take advantage of this great offer! Please contact wandak@broadwaves.net to order.) The program also included our new set of bylaws and our conflict of interest policy, reports from all of the Board members (eliminating the need for us to read them at the annual business meeting open to all members, which-let's face it-puts people to sleep!), information on all fundraisers, angel fund donation forms, and the panel discussion questions.

The scientific part of our program started with Dr. Theoharis Theoharides speaking on "Selective Release of Mast cell Mediators and the Impact of Stress." Dr. Theo gave a terrific talk, and he was followed by our own Candace Van Auken speaking on "What is a Mast Cell and How Does It Cause Mast cell disease?" This was an introductory lecture on mast cells that many patients have requested, and was very well received. Candace was urged by many members to write a book called Mast Cell Diseases for Dummies, and we are urging her to do so, with TMS support. Then, we had a talk from a dermatologist from M.D. Anderson, Dr. Madeleine Duvic on "The Spectrum of Skin Manifestations in Mastocytosis." Dr. Duvic had some excellent slides to share with us that demonstrated the wide range or rashes seen with mast cell disorders. After that, we broke for a two hour lunch break on our own. After lunch, Dr. Todd Wilson from NIH, new to our conference this year, spoke on "Anaphylaxis in Mastocytosis." Dr. Wilson was a wonderful speaker, and is a great addition to the NIH team.

At 2:45 PM, we gathered for a very special presentation. Gio Lamanna, a 16 year old teen from California whose mom,(Michelle Lamanna, a previous TMS Chronicles Editor) has systemic mast cell disease, wrote a song to the doctors called "We Look To You", asking them to find a cure for mastocytosis and related mast cell disorders in honor of his mother. Gio was inspired to play the guitar by the son (George Mahoney) of a TMS patient (Larry Mahoney). He was surprised one day to receive a guitar in the mail from yet another masto patient, Forrest Hansen. Gio has gotten quite good at playing the guitar and writing his own songs, and he wrote this terrific song, played it on the guitar, and sang it to all of us at the conference. He hopes to have a career in music, and he certainly evoked a wonderful response in this audience! There were many tears, including among the doctors while he sang his song. He has a beautiful voice, and the song was so moving. He had the song professionally recorded, and had the CDs made with his own money, and is offering them for sale on the TMS website, with the proceeds to go to TMS! Buy one-once you stop crying, you will be glad that you did! To further heighten the poignancy of the presentation, we had a video on the screen in back of Gio put together by Kolleen Barlow, of all faces of patients with mast cell disorders, alive and deceased. It, too, was very moving, and will soon be available for viewing on our website. It is also set to music, and Kolleen received permission from the artists to use their popular songs on the video without paying royalty fees.

At 3 PM we started the Panel Discussion, with Drs. Akin, Butterfield, Duvic, Escribano, Theoharides, Verstovsek, and Wilson participating. The panel questions were revised numerous times this year, and there were so many on mast cell activation, reflecting frustration that there has not been any progress in terms of defining the disorders of mast cell activation, that the doctors suggested that we just start the panel with an open discussion on that topic, which is what we did. The discussion went on for so long that Dr. Escribano got nervous, and said. "Houston-we have a problem-one hour has gone by and we are still on question number one!" I explained that questions number one was a compilation of numerous questions-between 40 and 80, and that we were just fine. The panel participants had an opportunity to read the individual questions that I submitted to them even though I did not read them on the Panel day, so the discussion took place with them well informed of our concerned. That did not change the fact that there simply are not answers yet for many of our questions, and the doctors are as frustrated with that as we are. From there, we got through about half of the other panel questions, before closing for the evening at 5 pm.

We reconvened at 7:30 for the Ice Cream Social sponsored by Blue Bell Creameries, and afterwards, everyone sat around and talked until almost 10 pm! The board cleaned up, and prepared for the next day.

Saturday morning, we did get more walk-in registrations, and again, we started with a continental breakfast at 8 AM. At 9 AM Dr. Mariana Castells spoke on "Patients Presenting with Anaphylaxis to Hymenoptera." This was a very popular talk, and there were many questions afterwards. Next came Dr. Srdan (Serge) Verstovsek, speaking on "An Update on New Therapies for Systemic Mastocytosis." Dr. Verstovsek and Dr. Escribano exchanged ideas at the microphone for several minutes, and Dr. V finally told Dr. Escribano that they are now in agreement that no Gleevac should be routinely used for indolent mastocytosis. Next, we had Dr. Escribano speak, and he again told us that his Spanish patients with mast cell disease can drink alcohol with no problem! Dr. Castells got up and took the microphone, and explained that she thinks that this is because Spanish people drink so much wine that they are desensitized to it, and their mast cells do not react to it. Dr. Escribano's talk, "Basic Concepts in the Treatment of Mast cell Mediator Related Symptoms in Adult and Pediatric Mastocytosis" was also very well received, and it was interesting that his patients report less experience with foods as triggers than we do here in the US.

Saturday is our time to share a hot buffet lunch with the members, and this year it was especially tasty! The food was very fresh and well presented. Afterwards, we held the Annual TMS business meeting open to all members. Minutes will be on the website soon.

At 1:30, a very jet-lagged Dr. Ed Reitman spoke on "The Stress of Living with a Mast Cell Disorder and the Impact on our Close Relationships." Dr. Reitman was exhausted from a trip home from Turkey, arriving at 3 AM the morning before, and he felt that he was almost too jet lagged to speak. While he did not speak exactly on the topic that we asked him to speak on, his talk really affected many people in a positive way, and we heard many comments even into the next day about the "inner child" that he referred to, so we considered his talk a great success. We are very grateful that he donated his time to talk after such extensive travel.

From 2:30-5:00 we had the next panel discussion, with a much smaller panel, as many of the physicians had to leave early this year due to prior commitments: Drs. Castells, Theoharides, and Escribano were fortunately still with us, so we were able to get through the questions much faster. We finished the panel questions in time to take a few questions from the audience before we started the raffle for door prizes and the silent auction.

We had many wonderful items donated for the raffle and auction, including two wonderful watercolors painted by my mother-one of the Bolivar, TX lighthouse, and one of Texas bluebonnets and daisies. Everyone went home with raffle prizes, door prizes, and gifts donated from Time Warner.

Sunday morning dawned bright and early again, and we had another breakfast with the members prior to breaking into groups for the support group meetings: patient group, caregivers group, and parents of children support group. The patient group was led by Rita Barlow, the caregiver group was led by Lissa Giacco, LMSW, and the parent group was led by Dr. Mariana Castells and Dr. Luis Escribano. The support group meetings went on for two hours, and everyone came out feeling so strengthened by the experience!

When we sit at home, I know that we often feel discouraged and wonder if anyone is working on finding a cure or new therapies for mast cell disorders. When we go to these conferences, we see the reality-that there are many researchers working every day trying to identify new medicines for all forms of mast cell diseases. This is not an easy process. It takes months and years to test each compound, and to determine if it will have activity against abnormal mast cells, or if it will calm down mast cells that are too eager to release their contents. All of the doctors present urged us to be assured that they are working hard every day on our behalf, and they are in this fight with us. Many of us felt the sincerity of their deep commitment to us, and we were so strengthened knowing that they are persevering in this difficult battle. It is a great feeling to be part of such an army of people dedicated to this cause!

We very much missed Board of Director members Cindra Carey, Len Levenda, and Emily Menard, all of whom were unable to join us. This is a close knit team, and when we are missing three of our members, we all feel the loss! Nevertheless, the meeting was an outstanding success, and we on the Board want to thank all the volunteers, attendees, doctors, and….each other, especially Wanda, for all of the hard work that went into this conference! I think we can see that much progress is being made in looking into treating mast cell disorders, and we are delighted to convene yearly for these updates! So far, for 2008, we have received one proposal for the Minneapolis, Minnesota area, and we are waiting to see if any other support groups indicate that they are submitting a proposal. A final decision will be made, and then, we will start right in on the 2008 conference!

Respectfully submitted,
Valerie Slee, Vice Chair
Board of Directors
The Mastocytosis Society