The Myeloma Mobile on the Road

After having a wonderful kickoff and interview with Dr. Mel on the Channel 8 News in New Haven on Friday, which you can see if you go to our main website, http://www.myelomamobile.myeloma.org, we headed to Boston and Fenway Park, where we were able to participate in the Pre Game Ceremony! Hurray!

This was totally awesome! We ended up having a table in the community homecoming stand (where Curt Schilling's wife Shondra has her SHADES foundation for Melanoma). We were right at a busy gate where thousands of people entered. We gave out all of our materials!!

At 1 PM we were escorted out onto the field. Mikey and I put some Fenway dirt into our pockets. (Really! It is sacred!! :-) They called our whole family onto the field, and we stood with Wally (the Red Socks Mascot) and 2 "Red Sox" Socks Mascots. The announcer introduced us, and talked about who we are, and what we are doing, and when he said Michael was a "7 year survivor" the entire place erupted in cheers and clapping! It was amazing! It was a sold out game - standing room only so 36,000+ people in attendance!
What a great day!

The visit was fantastic, outside in a big courtyard with tables set up and a stage and soundsystem. Heather (of Millennium) had asked us who all our favorite bands are and she made a mix that played.

Dr. Dunsire, Team Tuohy, Ronny Mosston of Millennium, and Arin Assero of the IMF.

It was a really fun, informal environment. Dr. Deborah Dunsire, Chief Executive Officer of Millennium, introduced us. Michael and I both spoke to the crowd, and then Ally and Mikey played Michael's song, "I'm Not Leavin", and the crowd loved it!

Dr. Dunsire and Ronny Mosston then signed the RV!

So, we are on to Watkins Glen, then Cleveland, then to Ann Arbor. We will be meeting with the Ann Arbor myeloma support group (about 24 members) for pot luck on Thursday and then the big event at U of Michigan will be on Friday.

It is now hailing, thundering & lightning - so time to get off the computer! Have a great day, everyone!!!!

Here is a funny story!

While enroute to Watkins Glen, NY; we needed to find a payphone so we could call in to a radio talk show! We were 9 minutes to airtime and a phone was no where in site! Lots of cow pastures and woods - but no phones! LOL!

We found a phone at a gas station in Cobbleskill, NY; made a quick phone call to the radio station and had 30 seconds left to airtime to spare! :-) Michael spoke on WDRC (CT radio station) about Myeloma, the IMF and of course our mission with the Myeloma Mobile. He must have done a great job as they would like us to do another segment!

Cleaning the bugs off the windshield.

Robin

We visited the University of Michigan Cancer Center for our Event in Ann Arbor. Jules Nagy and Diane Waltke are the support group leaders at the Ann Arbor Group and did a tremendous job at getting the word out! All their hard work paid off as they were able to reach out to patients in this area to spread hope, information and also news about their support group. They now have 5 new members that will benefit from attending their group. As you all know, people that attend support groups do better!!

On Thursday, June 21st we met with the Ann Arbor Support group at Mike and Margaret's house for a fantastic potluck supper. The food was delicious and the camaraderie unsurpassed. Everyone had a chance to talk about their diagnosis of Myeloma, treatments and quality of life. We also had fun just talking about our lives OUTSIDE of Myeloma! This group is lots of fun and I highly encourage anyone reading this blog within traveling distance to Ann Arbor to attend the group!

Jules Nagy with the Myeloma Mobile

Ann Arbor Myeloma Group – This group meets the 1st Tuesday of each month at St. Joseph Hospital, 5301 Huron River Drive, Ypsilanti, MI. Please enter through the 5305 building (Administration) and proceed to the 2nd floor and follow the signs to our meeting room in the Education Center. For more information, please contact Julius Nagy by e-mail at annarbormyelomagroup@yahoo.com.

On Friday, June 22, we had our event at the University of Michigan. Dr. Khaled started off the program and spoke about the role of transplant for patients and the latest and greatest that U of M is doing. He fielded numerous questions from patients and was very gracious.

Michael spoke about the Myeloma Mobile project and our goals; I gave a power point presentation and talked about all of the publications and programs that the IMF offers to patients. We finished up our visit with a slide show of pictures of where we've visited so far and Michael and Ally playing his song and then visited and spoke one-on-one with many patients. Everyone came out and signed the RV and wished us well.

Great stop, great people. Thanks to all involved! We are now off to visit 3 support groups in Wisconsin!

Robin