Monday, October 11, 2010

The National CML Society

Every now and again, one finds a story..... a story that stands out above many others. And so here is my new favorite one..... The National CML Society. This CML 'thing' is a long long road, sometimes with huge mountains and howling winds, but its definitely made easier by people like Greg.

This organization is one of the reasons that I can sit back on my duff and not be a freaky mama.... It's helping keep me informed of many aspects of CML of the latest treatments and information......all in one easy to find, read and understand, place.

A huge thank you to Greg and his family who started this all and to all that have got this up and running. So, here it is, in Greg's own words.........

Here's our story and how the NCMLS (a.k.a. Carolyn's Hope) came into existence.

In late December of 2004, our family was shocked to learn that my mom, Carolyn, had been diagnosed with breast cancer. This diagnosis came on Monday, December 27th during a follow-up appointment to review recent mammography and biopsy reports. Needless to say, it floored us. With the New Year's holiday only hours away, she was instructed to return on January 4th for surgery. Over the long weekend, we began to realize that our resolution for 2005 was to beat cancer. Little did we know that the following Tuesday, a CML diagnosis would come.

Following a radical, double mastectomy and chemo, she began taking Gleevec (800mg). Over the Gleevec journey she experienced severe side effects and was unable to achieve a cytogenetic response. Yes, folks, contrary to what some may say it DOES happen. Over the next 18 months she continued, diligently to take varying dosages of Gleevec to no avail. Sprycel was on the forefront and soon to be out of trial so the plan was to get into the trial and/or begin as soon as it was FDA approved. In October of 2006, she was still in chronic phase with still having a sub-optimal response. The plan was to begin Dasatinib at the next appointment in early January.

Christmas 2006 came with all its glory. Christmases in the Stephens' home were magical. Mom was the perfect hostess and everything ran so smoothly (she accomplished this ALL while working full time as a Human Resources executive for a large national company). The day after Christmas, she ran by her general practitioner's office for an unrelated matter. He asked some general questions and something caused him to do some quick blood work. It was then that she discovered that she had gone into blast. I remember the phone ringing and her saying "I'm in blast".

She was admitted later that day and the BMA revealed a 69% blast ratio. She immediately began Sprycel which returned her to chronic phase within days. Unfortunately, at the 10 week mark, the drug failed. At that point she entered the AMN 107 trial in Houston. Again, the drug returned her to chronic phase but it was short lived.

On July 28th, 2007 at 4:32 p.m central time, with my brother holding her left hand, I holding her right, and my dad stroking her forehead, Carolyn M. Stephens, wife, mother, Mema, and friend, died of CML. She had worked the previous week, enjoyed a birthday party for my nephew, and unknowingly lived her last days surrounded by those she loved most.

On August 3rd, only two days following her funeral, I knew that our journey was not over. You see, the journey never ends for a CML family, regardless of what happens. I am living a CML journey today because CML has forever impacted my life, the life of my family and our friends.

I, along with my father and brother, decided then and there that we would do all we could to ensure that others facing a CML journey had the information, access to specialists, ability to connect with others, and resources to help with the huge financial drain a CML diagnosis can bring about. Thus Carolyn's Hope was born. The organization was dedicated to her memory and we honestly thought we would simply talk with a couple of local families and help where we could. As time passed, two families, became four, four became 20, 20 became many, many more.

Over the past three years, I have witnessed this small work blossom into a beautiful thing that is bigger than any one person.

As we continued to grow, we realized the need to rebrand so that others facing the journey could readily find us. After talking with our board, medical advisors, and patient advisors, it was decided that we would take on a name that would better identify the work. As you know, another organization in Canada was already named The CML Society (of Canada). At that time, I approached Cheryl Anne Simoneau to ask if the organization would oppose Carolyn's Hope adopting the name "The National CML Society". After their board met, they graciously agreed and the decision was made to rename Carolyn's Hope.

The work is NOT a part of the CML Society of Canada, nor or we a subsidiary. We DO talk with the CMLSC often and have attended many of the same events, as have others on this site. The NCMLS a.k.a. Carolyn's Hope is a completely separate entity with a different charter, different leadership, and different yet similar services.

Today, The National CML Society a.k.a. Carolyn's Hope, is a rapidly growing organization dedicated to the ground based issues faced by those living with CML. They are as varied as dealing with side effects, to finding lodging in a strange city. We have quite a few new and unique services that are about to be made public. These services are unlike any available in the CML community today. It is our prayer that anyone facing a CML diagnosis will benefit from
these services.

I don't know your spiritual beliefs, but I can stand boldly today and say that God has directed this work and has opened doors beyond imagination.

We work with, and collaborate with a variety of organizations. That list includes;
the Lance Armstrong Foundation;
the I'm Too Young for This Foundation;
the International CML Foundation;
the Max Foundation;
the CML Society of Canada;
the Leukemia and Lymphoma Society (of which we are a referral agency – we aren't funded by them either);
Navigating Cancer, and others.

I choose to devote my time and energy solely to helping where I can, standing in the gap for those in need, and joining arm in arm as we ALL continue the journey that may one day lead to a cure.

My heart and priorities are in order and my family and I wish to contribute in whatever way we can. This is about LIVING with CML and living life ABUNDANTLY.

Our medical advisors are:
Dr. Michael Mauro, OHSU, Portland Oregon;
Dr. Jorge Cortes, M.D. Anderson, Houston, Texas;
Dr. Moshe Talpaz, Univ of Michigan Ann Arbor; and
Dr. Neil Shah, Univ of California, San Francisco.

Our Patient Advisors are:
Barb Stanley, Arizona
Beth Hodges, Georgia
Cindy Langley, North Carolina
Glenn Davis, Michigan
Jerry Mayfield, Illinois; and
Lee Spiva, Florida.

Over the course of the next few weeks you will see many changes. ALL of which have originated within Carolyn's Hope/The National CML Society.

We invite you to stay tuned. Please do not hesitate to contact me if I may answer any questions or if you'd just like to say hello.

My best to EACH and EVERY one of you!

Here for a Purpose!
Greg Stephens

Executive Director; Founder
31 Inverness Plaza #307
Birmingham, Alabama 35242

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