Next year’s Beach Party planning off to an early start

One of the amazing things about the final day of this year’s Beach Party: no one wanted to leave!  Instead, the 70 or so remaining patients and caregivers stayed, shared suggestions and started to help us plan next year’s event.   Volunteers stepped forward, committees were formed.  Michele and Stephanie even started a Pat’s Myeloma Beach Party Facebook group to help everyone keep in touch.

BEACH PARTY LOGOBefore we look ahead to next year, I wanted to take an opportunity to thank some of the many volunteers and contributors to this year’s weekend.

Yes, we couldn’t have done it without Takeda and Celgene.  The “big two” stepped up and paid for the travel for our speakers and the amazing food we enjoyed all weekend.

Sanofi paid for John Killip to fly in from Kansas City.  John spoke Friday night and Sunday.  Thanks, John.

I felt energized and hopeful after hearing the Orlando Magic’s Pat Williams speak after dinner Saturday night.  Pat payed his own way, and contributed free books at the book signing earlier that day.  The Magic also gave us some fun bag stuffers, too.

Thanks to all 14 speakers who participated in the event.  Awesome job!

The IMF and MMRF were represented.  Next year we hope to host representatives from the LLS and MMORE Foundation, too.

The company that provides the informative and sometimes controversial broadcasts that Gary Petersen and I host two or three times a month, Cure Talks, helped out by helping pay for the “swag” in your bags.  Thanks, Priya!  I’ve learned so much speaking with myeloma experts from all over the world.

Genetech got involved.  So did Onyx.  And lets not forget our two supporting foundations: the TBA Foundation, headed by the author of the new and invaluable Myeloma Survivor’s Guide, and CrowdCare Foundation, Paul and Jenny Ahlstrom’s innovative new organization.  CrowdCare is working hard to help identify and fund the next great hope for high risk and late stage myeloma patients like me.

Additionally, Fernandina’s local Starbucks, Walmart, the Day’s Inn, Amelia Hotel, and Ocean Club of Amelia all helped out.  The host facility, Slider’s Seaside Grill, displaced some regular customers in order to help us fit everyone in.  The service was excellent and the food exceeded my expectations.  Thanks to Nigel and his staff!

The Jacksonville Times Union ran a nice story about the event that helped a half dozen locals find us and help enrich the group.  Gator Garb contributed silent auction items.  So did Caribbean Full Service Salon, Designs by G, Otterbox and Jenny and her family.  All auction proceeds helped CrowdCare.  So did the fifty or so beach walk registrations.  What a beautiful, fun and memorable morning!

FV6A1673Thanks To Ed and Dianna for their airport runs to pick up and drop off speakers and guests.  With the help of volunteer Linda Weiss, Ed’s wife, Michele, ran registration like a pro–despite injuries she suffered during a fall earlier in the week.  Along with Hailey from Virginia, they handled things behind the scene.  Michele was my “right hand,” Hailey did the same for Jenny.

David Horton handled the sound.  His company’s name is Audio Fixx.  He did a great job!  We’re still working on getting everyone a CD mix that sums things up, helps you round out your notes on important therapy subjects and give you a memorable souvenir.

I’m sure I’m forgetting many.  But you get the idea.  It takes a village to put on an event as large as this; we had 107 registrants from 23 states and Canada for the seminar and an additional 50+ for the beach walk Saturday.  Toss in another two dozen speakers, support staff and pharmaceutical reps, and we would have had trouble fitting everyone in if we hadn’t had 25 paid no shows.

That was one of the first suggestion made by a number of people Sunday: up the registration fee.

I understand how expensive a weekend like this can be to attend.  And I also understand that myeloma patients get sick at the most inopportune times.   I get it!  But they’re right: next year we need to raise registration fees high enough to help encourage people to show up when they register.

So we’ll need a bigger venue next year.  Everyone loved how Sliders was right on the beach.  But it isn’t big enough to handle what we expect to be a much larger group of myeloma heroes next year.  We’re expecting well over 200 to take part.

Pattie and I have been out and about, checking out alternative facilities that might work for a much bigger group.  The good news is we’re on an island!  Beachfront all around!  My only lament: the biggest potential hosts on the Island are borderline too big; they feel too corporate.  This is supposed to be a fun, informal gathering!  There are a lot of small, intimate venues here–and a couple of really big ones.  Not much in-between.

That’s OK.  I think we’ve found a winner!  Gorgeous views, top notch facilities and staff.  We should have things narrowed down, and an unforgettable location and date picked for next year before the end of April.  That should give everyone plenty of time to mark their calendars and save on airfare.

About next year.  The consensus among this year’s group was to leave more time to rest, have fun and explore the island.  We’re looking into a number of activities, including boat rides, fun beach activities and tours of our historic downtown.  Can you say, “Ghost Tour?”

Other suggestions:  No speakers while we eat!   Break-out sessions and more choices.  Bringing in the best of the best myeloma experts.  And despite kicking-off our weekend with a wonderful talk by Karen Miller, Caring for the Caregiver, (sponsored by Takeda) more content and time devoted to those that help us keep going.

Great ideas!  All will be incorporated into next year’s event.

We’re in the process of forming committees to help accomplish all of this–and more–next year.  If we didn’t get your name down on Sunday, please email me or Michele in Arizona.  She’s helping organize it all: patsbeachparty@gmail.com .

Easter is early again next year.  And the weather here gets better by the day in spring.  So next year’s most likely date: the weekend of April 8th.  Spring break will be mostly behind us, room rates should come down a bit and the weather should be perfect: upper 70’s and lots of sun!

Once a decision is made, you will be the first to know.  Stay tuned!

Feel good and keep smiling!  Pat

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