Monday, February 2, 2015

I'm on Huffington Post! And let's cure Myeloma. MCRI is officially accepting proposals for high risk disease

Two very exciting things happened yesterday. (No, it wasn't the Super Bowl-- I am very sad that Seattle lost). The Huffington Post published another one of my articles! And... The Myeloma Crowd Research Initiative (MCRI), of which I am serving on the board, is accepting proposals for high risk disease. Let's cure myeloma! I really believe this is potentially a game-changer in the world of myeloma and how cures can be found.

Inside The Marriages Of Non-Monogamous Couples

Posted: Updated:
By Lizzy Smilez for
Here are three real scenarios from couples I know well. And they have turned everything I thought about fidelity on its head.
1. The Open Marriage:
Kim and Troy have been married for 25 years and have two children. If one was an outsider looking in, they are the perfect couple. They are both beautiful people, have a beautiful home with a shiny pool in the back yard, two dogs and a cat, two perfect careers, two nice cars and a boat. They are fun to be with, always up for an adventure or a night out. They laugh and are affectionate with each other.
But Kim confided in me that they have been going through a rough patch for years. Troy has been fantasizing about being with other women and wanting her to be with other partners, men or women. They are both bored and have been considering divorce for a few years. Troy cheated on Kim throughout their four year relationship prior to marriage and to this day, she thinks that maybe Troy has cheated on her after their wedding, too. Every time he texts or picks up a call, she wonders.
Finally, at Troy's encouragement, she slept with a friend of Troy's. They filmed it and texted it to Troy. And instead of it destroying their trust and relationship, it has revitalized it. She says they have sex all the time now, they are open with each other in ways they never have been, and she actually trusts Troy because she feels, at last, he's honest. Brutally honest, not always easy to hear. But at last, she doesn't wonder anymore.
I asked Kim if she felt guilty about having the one-time sexual tryst with Troy's pal. No, she said, because she did it for Troy and the outcome has been good for them. She was on the verge of a divorce and, time will tell if infidelity has perhaps saved their marriage. I asked if she would do it again. Probably not.
What will she do if Troy has an affair, or many affairs? She's not sure she cares that much, as long as it's "just sex." And what if it isn't? What if one of those "just sex" women becomes something more? Kim says that she and Troy are strong, they have been together so long that no woman will end their marriage. She's that sure of it. And she, the jealous type, is all of a sudden, more sure of herself than ever, and not feeling so jealous anymore. She feels... at peace.
Kim has decided that she will sacrifice her monogamous marriage in order to have honesty, transparency and openness in their relationship. Honesty at almost any cost. The rules of their marriage have now changed. Will this lead to long-term happiness? Time will tell.
2. The Known Cheater (And Looking The Other Way):
When Lori met Sam, he was already married. She helped break up his marriage and it was an ugly split. Sam's wife fought hard to keep her guy but, ultimately, she failed. A year after their divorce was final, Lori got her wish -- Sam married her amidst great fanfare and a huge wedding. It's been 15 years and they have three sons. As an outsider looking in, they are also the perfect couple. A beautiful home with a pool, two great careers, beautiful boys who are in every sport one can imagine, and one awesome Golden Retriever.
Sam and Lori go to all their boys' games and activities and they have all the beautiful photos on Facebook to prove it. They are one happy family. Except Sam cheats on Lori all the time. Whether it's with his co-worker, the neighbor, his ex wife, or the daughter of a family friend. And Lori knows it. Most of the time, she pretends it's not happening. But a few times, it's been so "in her face" that she's had no choice but to confront it.

PRESS RELEASE: New Crowdfunding Myeloma Initiative Begins With Call For Letters Of Intent For High-Risk Multiple Myeloma Solutions

SALT LAKE CITY: Jan. 30, 2015 — The Myeloma Crowd Research Initiative (MCRI) is calling for research proposals for high-risk multiple myeloma, a rare blood cancer from February 1-28, 2015 on the Myeloma Crowd website at
The MCRI is a new way of fundraising for myeloma research, combining the skill and knowledge of leading myeloma specialists with educated “epatients” to together select and fund promising research projects in myeloma. This is the first time a united group of patient activists have helped steer the direction of myeloma research.
The MCRI has selected high-risk myeloma including genetic features (del 17p13, 4;14, 14;16 and 14;20) and aggressive features in relapsed/refractory myeloma patients as its main area for research funding. While life expectancy has doubled in the past ten years with the introduction of new myeloma drugs, outcomes for patients with high-risk myeloma is still dismal. As myeloma progresses, it becomes more aggressive, many times acquiring new high-risk features as it matures.
Multiple myeloma expert Dr. Rafael Fonseca, MD of the Mayo Clinic in Scottsdale, Arizona, said, “The study of high-risk myeloma should be one of the top priorities for myeloma researchers. New and radically different treatment approaches are needed.”
Hitting the hardest cases of myeloma with new ideas is a bold, top-down approach that will provide a trickle-down effect to standard or low-risk patients that continue to live with this incurable cancer. “What we have learned is that treatments that work well in high-risk patients tend to work even better in standard-risk patients,” said Dr. Guido Tricot, MD, PhD, University of Iowa.
Letters of Intent will be accepted on the website from February 1-28, 2015. Proposals from selected applicants will be reviewed by both a Scientific Advisory Board and Patient Advisory Board who will select final projects for crowdfunding campaigns.
Due to the nature and incidence of high-risk myeloma, collaborative proposals between facilities and investigators are welcome.
MCRI Scientific Advisory Board: Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD (University of Iowa), Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale), Dr. Noopur Raje, MD, PhD (Massachusetts General Cancer Center) and Dr. Robert Orlowski, MD, PhD (MD Anderson Cancer Center).
MCRI Patient Advisory Board: Pat Killingsworth (, Gary Petersen (, Jack Aiello (NCI steering committee member, well-known myeloma patient advocate), Jenny Ahlstrom (, and Cynthia Chmielewski (
MCRI Communications Advisory Board: Dr. Mike Thompson, MD, PhD (ASCO Social Media Work Group, co-founder #mmsm Twitter group) and Myeloma Crowd patient advocate Lizzy Smith (
About Myeloma Crowd/CrowdCare FoundationThe Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Find us on
Contact:Jenny Ahlstrom
Myeloma Crowd