Pat’s Myeloma Beach Party – What A Fantastic Awareness, Educational, and Research Funding Event

I often call Jenny Altstom, who has developed the Myeloma Crowd web site and the Myeloma Crowd Research Initiative or MCRI, an energizer activist, but I think she has met her match with Pat Killingsworth.  Pat has a number of blogs, writes for the Myeloma Beacon, Myeloma Crowd, IMF, and MMRF.  He has published several books and put together a Beach Outing for the benefit of myeloma patients and caregivers for the last two years, all while fighting an active and very painful bone disease caused by his multiple myeloma.  When you put the two of them together, and that was what they did for the Beach Party and MCRI(Myeloma Crowd Research Initiative) 5K Beach Walk, you can only expect an event which generated fun and fireworks.  I have to show you the agenda, because it was just jam-packed.  What a GREAT experience had by all, and I got to meet people I had only known through email. 


Beautiful Fernandina Beach, Florida

3 – 4 PM Registration – Sliders Seaside Grill
4 PM Welcome! Host Pat Killingsworth – Sliders Second Floor
4:20 PM Takeda presentation
5:15 PM John Killip, DDS—Medication Related Osteonecrosis of the Jaw
6 PM Dinner – Ocean Club
6:30 PM Dr. Asher Chanan-Kahn—Head of Hematology, Mayo Clinic- Jacksonville
7:15 PM Danny Parker – Myeloma Nutrition
7:45 PM Haydon Fouke—Benefits of Medical Marijuana
8:15 PM Danny Parker – Meditation
9:00 PM Social Hour

Saturday, March 21st

7:30 AM Meditation on the beach – Danny Parker (Half way between Sliders and Ocean Club)
8:00 AM Beach Walk Registration – Ocean Club patio
9:00 AM Beach Walk Start
11:30 AM Buffet Lunch – Sliders 2nd floor
Noon MMCentral—Celgene Pharmaceuticals
Silent Auction Bidding Open
12:45 PM MMRF—CoMMpass Update
1:15 PM IMF Overview
1:40 PM Myeloma Treatment from a Patient’s Perspective: Town hall meeting – Q/A with Dr. Noopur Raje, myeloma researcher and specialist at Massachusetts General Hospital
3:00 PM Sponsor forum: It’s a team effort: Takeda and other drug companies working hard to help keep us alive and improve our quality of life
3:30 PM Myeloma Book Club. Q/A and meet authors Pat Williams, Dave Visel and Pat Killingsworth
4:30 PM Dr. Noopur Raje: Hopeful new myeloma therapies
5:00 PM Cocktail Hour. Time for a quiet walk on the beach
6:30 PM Dinner – Sliders 2nd Floor
Welcome! Pat Killingsworth
Jenny Ahlstrom – Crowd Care Foundation: Crowdfunding Myeloma Initiative
7:30 PM Pat Williams (VP Orlando Magic and myeloma survivor) Keynote Address
Silent Auction Closed
8:30 PM Reflections on a great day! Silent auction results

Sunday, March 22nd

8:00 AM Spiritual awakening on the beach – Danny Parker (Beach side of Ocean Club
9:00 AM Brunch buffet – Sliders 2nd Floor
9:30 AM Research update: Overcoming myeloma drug resistance – Brian VanNess, University of Minnesota
10:15 AM Journey Partners presentation: Sanofi
11:00 AM Beach Party Q/A and critique. How can we improve things for next year? What topics would you like to see covered?
11:30 AM Meet you on the beach!

The gang was all here, IMF, MMRF, MCRI, Dr. Raje(Mass. General), Dr. Chanan-Kahn(Mayo), Brian VanNess,  Danny Parker, plus many more and also the generous sponsors of Takeda and Celgene.  And most of all I must mention a great group of walkers who, as patients, walked though pain to raise money, and for others who walked with love in their hearts to help fund research.  A few of the pictures I took follow.  Good Luck and May God Bless your families myeloma journey.  What a caring, hopeful, and outstanding group of people. 

Jenny and Paul Ahlstrom are HAPPY to Mambo For Myeloma

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