• Life With Multiple Myeloma
    • Jan 12, 2017

    Pat’s Myeloma Survival School: March 3-5, 2017 in Fernandina Beach, Florida

It’s almost time for Pat’s Myeloma Survival School in Fernandina Beach! Now in it’s fourth year, the Myeloma Crowd is supporting the event and we invite you to attend with us. It’s an incredible way to learn tips for living with myeloma and the latest in research in a friendly beach setting. Created by our myeloma friend Pat Killingsworth, his wife Pattie, friends Michele & Ed Daniels and Dave Visel are carrying on this incredible tradition.

Where: Women’s Center, Fernandina Beach
When: March 3 – March 5, 2017
Cost: $60 (includes meals)
Closest Airport: Jacksonville, Florida

Friday, March 3

10:00 am: Massages.  We have a very special treat! We have Melanie House, DPT, NCS from Department of Rehabilitation Therapies, University of Iowa Hospitals and Clinics, Adult Bone Marrow Transplant Unit, Iowa City, IA, heading a “Free personalized therapeutic massage evaluation and treatment” specifically designed for multiple myeloma. Patients and their caregivers are eligible for this special offer, included with their $60 Registration Fee. These are not to be missed, so schedule your massage before spots fill up.

Friday afternoon sessions begin at 2:00 pm and include:

  • “Focused Exercise Program for Stem Cell Transplant”, Melanie House, DPT, NCS
  •  “Lessons Learned: A PT’s Journey, As Patient, Through Tandem Transplant”, Leah Lenz, MSPT, CEP, CSCS
  • “Massage Demonstration for Caregivers” Daphne Moeller, LMT, Coastal Massage Therapy, Fernandina Beach, FL, Tony Crawford, LMT, Jacksonville, FL
  • “Total Therapy Demystified” Guido Tricot, MD, Ph.D., Director, Bone Marrow Transplant and Multiple Myeloma Program, Holden Comprehensive Cancer Center, University of Iowa Hospitals and Clinics

Saturday, March 4

8:00 am Muscles for Myeloma 5K Beach Walk. This is a relaxing walk on the beach to get you going before sitting all day. Capture your memories with friends at our beach-themed photo booth at the end of the walk. Walk price is $20 and includes an exclusive “Muscles for Myeloma BeachWalk 5K” shirt and photo booth online pictures. (Register before February 18 to guarantee a shirt)

  • “Basic Survival Strategies” Dave Visel, “The Multiple Myeloma Survival Guide”
  • “Survivorship Care for Multiple Myeloma Patients and Caregivers” Tracy Bonds, RN, Clinical Nurse Educator, Amgen
  • “The CrowdCare Mission” Jenny Ahlstrom, CrowdCare (Remember Silent Auction Proceeds go to CrowdCare!)
  • “Leading Clinical Trials for Myeloma Patients and what these Trials are Teaching Us”
  • “Developments in Myeloma Therapies” Dr. Asher Chanan-Khan, MD: Professor and Chair, Hematology/Oncology, Mayo Clinic, Jacksonville
  • “Protect Your Kidneys” Mary Doyle Faculty Administrator and Maria Mercado, Patient Liason, New Port Richie Kidney Center, New Port Richie, FL
  • “Preventing Osteonecrosis of the Jaw” John Killip, DDS, Myeloma Patient, Professor Emeritus, University ofMissouri, School of Dentistry, Kansas City, MO
  • “Understanding Lab Values” Kena Miller, RN, Takeda Oncology
  • “Taking Care of the Caregiver” Ann Pacowta, Regional Director, International Myeloma Foundation
  • “The Stem Cell Transplant Experience” John Killip, DDS, MMJP Program, Sanofi
  • “Empliciti” Bristol Myers Squibb
  • “A Myeloma patient’s war on Myeloma” Tony Blau, Professor of Medicine/Hematology,
  • “When Myeloma Hits Home” Sibel Blau, MD, Medical Director, Rainier Hematology-Oncology, Clinical Associate Professor, Division of Hematology
    University of Washington

Sunday, March 5

  • “MMRF Research Update” Anne Quinn Young, MPH, VP, Development and Strategic Partnerships, MMRF, Norwalk, CT
  • “Promising Myeloma Drug Research” Brian VanNess, PhD, Head, Dept of Genetics, Cell, Biology and Development, University of MN Cancer Center
  • “My Life is Worth It” Bob Tufts, Myeloma Patient, Former Major League Baseball Player, Now teaches at three East Coast Universities, talks to us about values and goals.

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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