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Pat's Myeloma Beach Party - What A Fantastic Awareness, Educational, and Research Funding Event

3/24/2015

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

Friday, March 20th – NOTE CHANGE: SLIDERS FIRST FLOOR
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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Multiple Myeloma Awareness, Education, and Funding - The Keys To Improved Survival Rates, Good New Bad News!

3/9/2015

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March is Multiple Myeloma Awareness month, and the myeloma patient community has much to be thankful for, however there are still some major challenges to overcome. And I think we can sum them up into Good News and Bad News.

Bad News then Good News

The Bad News is that according to a study by the UK only 3% of the population have ever heard of myeloma, and 1 in 5 die within 60 days of diagnosis due to delayed diagnosis. CLICK HERE to see their presentation.

The Good News is that we have new innovative awareness programs to help to promote awareness in the general population and in the general practitioner community. Myeloma Crowd has a list of activities each of us can do to help to improve awareness. Mambo for Myeloma is one of them, and Pat's Myeloma Beach Party is another. To view CLICK HERE. The MMRF also has a list of activities if you CLICK HERE. We still have a long way to go to get the word out to the general practitioner community to conduct M spike and light chain tests to find myeloma early when it is easiest to treat.

The Bad News is National Cancer Institute (NIH) provides myeloma with just half of the funding per life lost as compared to the average of funding for all other cancers. We receive $45.4 million dollars or $2017 per life lost, and this has dropped because of government funding cuts. What this means is that we have far less money to fund clinical trials than the average cancer. Melanoma, the skin cancer, gets $122.5 million and has one half the deaths as does myeloma, so they get $12,616 per life lost. More money means more clinical trials, and NO TRIALS, NO CURE.

The Good News is we have institutions like the IMF(International Myeloma Foundation) which bring some of the best minds together to help focus research, and the MMRF (Multiple Myeloma Research Foundation) which has a focus on research but also has been a remarkable fund raising engine. In 2013 they have collected over $29 million or almost 65% of that which we receive from the NCI. They have helped to speed 5 new drugs to market for the myeloma patient community. Now we also have a new funding and research initiative which could in fact revolutionize funding, trial selection, focus, and perhaps get myeloma to a point where we have funding above the average of other cancers. It is the Myeloma Crowd Research Initiative (MCRI), that could provide patients, caregivers, doctors, and the general public an opportunity to back the trials which they feel will provide the best opportunity for success. Improvements in cancer have been a slow evolutionary approach, and this may just be the breakthrough REVOLUTIONARY approach we have prayed for. I do know this, it has drawn some of the smartest, skilled, energetic, and talented myeloma specialists in the world to be part of the MCRI scientific advisory board.

The Bad News is the average life expectancy for myeloma, as reported by the National Cancer Institute, has not improved in the last 4 years. It remains at just 4 years on average.

The Good News is that in the last decade it has improved by 33%, or from 3 years to 4 years. More good news is that if you are diagnosed early enough before the disease has progressed too far to be adequately treated or is high risk disease (15% of patients), and you get care from a multiple myeloma specialist you can expect to live on average 10 years and more. Perhaps even more based on the rate of development of new drugs and treatments. So how do we beat the average? If you are over 50 and have bone pain, broken bones without much of a reason, anemia, high calcium in the blood, high blood pressure, kidney insufficiency, fatigue, slow to stop bleeding, crusty patches of skin, these all may be the result of early multiple myeloma development and you should get a M spike and light chain test to rule them out. At 55 you should get these tests every other year as part of your annual physical. It is an inexpensive test, and in this case it is better to be SAFE THAN DEAD! In addition, the local oncologist or hematologist is not skilled enough to treat myeloma unless they see 100 myeloma patients or more per year. A multiple myeloma specialist MUST be on your team to insure you beat the average life expectancy.

Over the nine years of my journey, I have learned more and more about myeloma and the Good and the Bad about myeloma. When the average survival rate for all patients does not change for 4 years straight, it can be very discouraging, but when I get a letter from someone I have helped, I am renewed. It reminds me of the parable of the starfish and the young boy.

The Boy and The Starfish

One day, an old man was walking along the beach in the early morning and noticed the tide had washed thousands of starfish up on the shore. He spotted a boy who appeared to be tossing them back into the ocean.

He approached the boy and asked him why he spent so much energy doing what seemed to be a waste of time.

The old man gazed out as far as he could see, "But, there must be hundreds of miles of beach and thousands of starfish. You can't possibly rescue all of them. What difference is throwing a few back going to make anyway?"

The boy then held up the starfish he had in his hand and replied, "It will make a difference to this one!"

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Pat's Myeloma Beach Party - What A Fantastic Awareness, Educational, and Research Funding Event

Jenny and Paul Ahlstrom are HAPPY to Mambo For Myeloma

Multiple Myeloma Awareness, Education, and Funding - The Keys To Improved Survival Rates, Good New Bad News!

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