Re: Please Read - A Word of Clarification about The National CML Society

[Guest guest]

>

> Here for a Purpose!

>

> Greg s

> Executive Director & Founder

> The National CML Society a.k.a. Carolyn's Hope

> 31 Inverness Plaza #307

> Birmingham, Alabama 35242

> 877-431-2573

> gstephens@...

________________________________

Hi Greg,

Thanks for the clarification that you have given. You have known me for a long

time, and your Mother was an exceptional person, working with a smile right up

until the time she passed on from CML.

There is one thing that you don't mention in your post and that is the funding

of your organization. I was quite surprised really when Lottie wrote recently

that this is now a FULL time job for you (that you are able to support your

family by running this organization?) How much of the funds that you receive are

going to cover over-head costs vs. the funds spent for patient support,

education, etc. This is an important factor in any organization.

Because there are really so few CML patients dx each year and total number

living at one time in the US (but definitely increasing!), a National

organization seems like a good idea....many people do not have access to the

specialists, or know another patient with CML.....but I am not sure that the

word is really out there. Also, what are you offering that is different than the

L & L Society, or how would you do a comparison? when I get to the library, I will

listen to the interview that Lottie posted about.

Sincerely,

C.

[Guest guest]

Thank you for your post, .

For the past three years, all funding has come from my retirement and other jobs

I've worked. We are hoping to apply for some grants and do some fundraising in

order to provide more services, a hem/onc CML nurse for access here at the

office, etc.

I've personally bought airline tickets, paid for hotel rooms, assisted with

bills and medication costs, etc. ALL from my personal account as well as some

dollars we set aside from my mother's life insurance proceeds.

We have recently obtained a small educational grant to put in place some

services for the community and you will see those come online shortly when we

launch our new website.

Yes, I work at this full-time and hope to continue to do so. As far as being

compared to the LLS, you'll be interested to know that they have contacted US

and are using us as a referral agency. They do great work and provide many

educational opportunities. At the NMLCS, everyone here knows CML on a deeply

intimate and personal level. :-) Our services are geared more toward needs

that are directly related to the journey.

In our proposed budget, once we get general funding, greater than 80% will go

directly to patient services and education. That is a lofty goal, but one I

think is doable. I dare say that if you check out other organizations, you will

realize that their overhead vs. services is not in that range.

I hope this helps.

>

>

> >

> > Here for a Purpose!

> >

> > Greg s

> > Executive Director & Founder

> > The National CML Society a.k.a. Carolyn's Hope

> > 31 Inverness Plaza #307

> > Birmingham, Alabama 35242

> > 877-431-2573

> > gstephens@

> ________________________________

>

> Hi Greg,

> Thanks for the clarification that you have given. You have known me for a long

time, and your Mother was an exceptional person, working with a smile right up

until the time she passed on from CML.

>

> There is one thing that you don't mention in your post and that is the funding

of your organization. I was quite surprised really when Lottie wrote recently

that this is now a FULL time job for you (that you are able to support your

family by running this organization?) How much of the funds that you receive are

going to cover over-head costs vs. the funds spent for patient support,

education, etc. This is an important factor in any organization.

>

> Because there are really so few CML patients dx each year and total number

living at one time in the US (but definitely increasing!), a National

organization seems like a good idea....many people do not have access to the

specialists, or know another patient with CML.....but I am not sure that the

word is really out there. Also, what are you offering that is different than the

L & L Society, or how would you do a comparison? when I get to the library, I will

listen to the interview that Lottie posted about.

>

> Sincerely,

> C.

>

[Guest guest]

> For the past three years, all funding has come from my retirement and other

jobs I've worked. We are hoping to apply for some grants and do some

fundraising in order to provide more services, a hem/onc CML nurse for access

here at the office, etc.

>

> We have recently obtained a small educational grant to put in place some

services for the community and you will see those come online shortly when we

launch our new website.

___________________________________

Hi Greg,

Thanks for the additional information. Unlike Lottie, I don't manage to get all

around the internet because of my very dated computer and dial up!! So I do not

explore as much as others do......and with my connection to Dr. Druker, I feel

well covered.

I was recently asked by my new local onc to participate in a panal about drug

trials, but I was busy.....I think the request came from the local L & L Society

which is kind of new here in Eugene. We do have a Light the Night event, but it

used to be organized out of Portland. My new doctor did not know anyone who had

been in as many trials as I have (triple therapy at MDACC, Gleevec phase 2, a

vaccine trial, Sprycel trial.......and now free lancing it on Tasigna) but I do

not compare to our champs on this list, like Bobby and Lottie.

Greg, you sound very dedicated to this endeavor and I know it really takes a lot

of work to get something new up and running. I hope you will find some good

funding in educational grants, etc. Carolyn had a big dream and you are working

to make it reality.

On my refrigerator I have a post card size child's drawing from the L & L Society

and it says: I wish everyone has a cure!

(aka Maui Nanc)

[Guest guest]

Hello Greg

Keep going, my friend, you are doing just GREAT!! And yes, you are guilty -

guilty of being a very genuine, caring, loving person. Someone with a depth of

character and integrity that is lacking is far too many; a person who genuinely

cares and who is going out of his way all day, every day to do something

wonderful for others! You are indeed a wonderful and rare onion

Sending you lots of love and a HUGE thanks

Annie

's mom

http://livingwithcml.blogspot.com

>

> I apologize in advance for the length of this post, but I implore you to read.

>

> A word of clarification regarding The National CML Society – Please read.

>

> Hello all,

>

> I wanted to write today to clarify the origin, direction, leadership, and

objectives of The National CML Society. The organization, as well as my family

and I are an open book and I want you to know that if you have questions, I am

as close as email or the phone.

>

> Evidently, today has held a few " interesting " lines of thought on . For

me, I was in the car all day so I am only just now becoming aware that

" something " happened, however I am not privy of the details. Since, evidently,

my integrity was called into question, I thought it appropriate to share as I

have been part of this group for quite a few years and post occasionally. Many

of you are dear friends and I am most fortunate to know you all. So, 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 s' 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.

s, 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 – and we

aren't funded by them either), Navigating Cancer, and others.

>

> I apologize for being so long with this message, but I thought it necessary to

completely outline the origins and direction of this organization.

>

> I would be a fool to say that I am not aware of the " politics " that come into

play in the CML world. However, 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.

>

> If that is a crime, then pronounce me GUILTY.

>

> I hope that you will see that my heart and priorities are in order and that my

family and I only wish to contribute in whatever way we can. This is about

LIVING with CML and living life ABUNDANTLY.

>

> Our medical advisors are:

> Dr. Mauro, OHSU, Portland Oregon

> Dr. Cortes, M.D. , 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

> Langley, North Carolina

> Glenn , Michigan

> Jerry Mayfield, Illinois; and

> Lee Spiva, Florida.

>

> Over the course of the next few week 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 s

> Executive Director & Founder

> The National CML Society a.k.a. Carolyn's Hope

> 31 Inverness Plaza #307

> Birmingham, Alabama 35242

> 877-431-2573

> gstephens@...

>

[Guest guest]

just want to say hello,

faiz,

malaysia...

________________________________

From: Annie B <ibannie@...>

Sent: Monday, 11 October 2010 12:14:29

Subject: [ ] Re: Please Read - A Word of Clarification about The National

CML Society

Hello Greg

Keep going, my friend, you are doing just GREAT!! And yes, you are guilty -

guilty of being a very genuine, caring, loving person. Someone with a depth of

character and integrity that is lacking is far too many; a person who genuinely

cares and who is going out of his way all day, every day to do something

wonderful for others! You are indeed a wonderful and rare onion

Sending you lots of love and a HUGE thanks

Annie

's mom

http://livingwithcml.blogspot.com

>

> I apologize in advance for the length of this post, but I implore you to read.

>

> A word of clarification regarding The National CML Society – Please read.

>

> Hello all,

>

> I wanted to write today to clarify the origin, direction, leadership, and

>objectives of The National CML Society. The organization, as well as my family

>and I are an open book and I want you to know that if you have questions, I am

>as close as email or the phone.

>

> Evidently, today has held a few " interesting " lines of thought on . For

>me, I was in the car all day so I am only just now becoming aware that

> " something " happened, however I am not privy of the details. Since, evidently,

>my integrity was called into question, I thought it appropriate to share as I

>have been part of this group for quite a few years and post occasionally. Many

>of you are dear friends and I am most fortunate to know you all. So, 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 s' 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.

>s, 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 – and we

>aren't funded by them either), Navigating Cancer, and others.

>

> I apologize for being so long with this message, but I thought it necessary to

>completely outline the origins and direction of this organization.

>

> I would be a fool to say that I am not aware of the " politics " that come into

>play in the CML world. However, 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.

>

> If that is a crime, then pronounce me GUILTY.

>

> I hope that you will see that my heart and priorities are in order and that my

>family and I only wish to contribute in whatever way we can. This is about

>LIVING with CML and living life ABUNDANTLY.

>

>

> Our medical advisors are:

> Dr. Mauro, OHSU, Portland Oregon

> Dr. Cortes, M.D. , 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

> Langley, North Carolina

> Glenn , Michigan

> Jerry Mayfield, Illinois; and

> Lee Spiva, Florida.

>

> Over the course of the next few week 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 s

> Executive Director & Founder

> The National CML Society a.k.a. Carolyn's Hope

> 31 Inverness Plaza #307

> Birmingham, Alabama 35242

> 877-431-2573

> gstephens@...

>