Re: Staying in the Shadows

[Guest guest]

> CML fundraising is not on the same scale. Maybe we need to brainstorm, but

the LLS is holding some back because they do not want you to raise money any way

but the way they propose and I think they are limiting themselves. Bobby can

tell you she used to raise money, but they said she couldn't have any more tea

parties, so when they discontinued that, they lost money. Bobby is a good fund

raiser in her own right. Now she donates her time and talent to other

organizations. Someone wrote recently, who said they raised the money the way

they wanted and just donated it to LLS, but they did not have the blessings of

LLS, nor did they know (I don't think so anyway). Why would they refuse money

that was raised if it was legitimate anyway?

____________________________________

Hi Lottie,

There was just an abstract (maybe you posted it) that said there were about

22,500 people living with cml in the US.....this is an orphan disease, and it

will not be known by many.....but leukemia itself is more prevalent.

Breast cancer patients and survivors number in the hundreds of thousands. So, of

course, more people will have a connection to this disease, themselves or

family or friends and fund raising will be much easier.

If you are fund raising in the name of the L & L Society, I can understand why

they want to know how it is being done....because it reflects on their

organization. But there are many options for this. Mostly participants in the

Teams in Training get pledges or just donations.

One day I was walking into one of my favorite local markets, and there was a

young guy and gal on racing bikes set up on trainers (so that you can pedal like

crazy and not go anywhere) and there was a sign that they were in training for

an L & L Society long distance bike ride to raise funds. I stepped up to them

and told them that I was one of the people that they were raising funds for and

how much I appreciated what they were doing. It was really surprising, but they

were thrilled to meet someone who was benefitting from their efforts.

Also, in this day and age, you need to know that people who claim to be fund

raising for something are legitimate. So they are given signs from the L & L

Society, etc.

I do think that maybe I have read that the L & L Society has been the largest

donor for research from a private organization? and that maybe it is second only

to the federal govt. grants????? maybe someone involved in this fundraising

knows the stats on this.

Locally, the firemen raise funds for MD, decked out in their full fireman's gear

and holding up a boot for the donations. Who can resist those hunky guys,

standing in the middle of the street (between the lanes) with a big smile!!

whoever came up with that idea had a winner.

Anyway, hats off to those on our list who have really gone out of their way to

raise funds for patient services and research.

C.

[Guest guest]

Hi, yes, I raised some bucks for LLS a few years back having tea parties.  I

raised $18,000.00.  But the fourth year when i called them for donation

receipts, they said they were " not doing tea parties anymore " they were finding

new ways to raise money.  I was really ticked, I meet ladies today that want to

know why I quit having them, (of course, truth be known, I didn't serve tea, I

served Mimosas!)

Then this year I signed up for the Totally Baldacious fund raiser.  Gals, keep

in touch with your old boy friends, one of mine donated $200.00 and another

donated $100.00 !!  But, once again, when I emailed " the boss " for donation

forms for an idea I had, I was told right out, this fund raiser is for the

internet only, if I wanted to raise money other ways, I should call my local

office and discuss it with them...........

Now I was really ticked.  I made most of the money at the tea parties selling

raffle tickets for a weekend away at any one of 50 Holiday Inns around the US,

two nights, etc.  So I thought with my new fund raiser, I would keep it local

and put together a weekend getaway in Cleveland.  I had already contacted a

hotel, a theater and a restaurant, the best in Cleveland, and they asked for a

certain form from LLS.  Well, I wrote for it  and the answer I got was this

was an internet fund raiser only. 

I really didn't understand why I could not raise money at a huge fund raiser,

and donate it on line and have it accepted?  Money is money, who cares how it

is donated, if it ends up in the right place?  I had a list of people willing

to shave their heads, beards, and mustaches at my fund raiser, I had a place to

have it, I had live entertainment, free.  But I  have to tell you, maybe

because I am 80, getting a bit sensitive maybe?  I was just plain ticked off

and quit the whole idea.

I am at present making scarves and hats again and selling them, two and three

years ago I made over $2,000.00 this way, gave half to Parkinson's and half to

LLS.   This time it is going to the Women's Auxilliary of the American

Legion.  I am in charge again this year of the bake sale and the poppy sale for

Memorial day, at the Legion,  and will be happy with the few hundred dollars it

raises.  They do good things also for the boys in the service.

But truthfully, I am not happy about being put down by the LLS and fund

raising.  I know I should have had the fund raiser anyway, and sent this woman,

personally a huge check, but my heart is not in it anymore. Guess with age comes

pettiness?

Now I hope this does not get me in trouble with the LLS?  perhaps I should not

mention their name?  but the truth is the truth, and maybe I just happened to

reach out to two different people at a bad time in their day, who knows?

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Lottie Duthu <lotajam@...>

Subject: [ ] Staying in the Shadows

" CML " < >

Date: Sunday, October 17, 2010, 1:42 AM

 

Dear Leah,

I like your analogy of the ripples in the pond, my mother used to say something

on that order, but I don't remember her exact words, she told me so many things.

in NY, I thought of you and your choice to remain silent about your CML

and that is o.k. for personal reasons, but if Leah is right, Kareem is taking

money from Novartis. O'Neal is washed up as an actor, but he still has some

star power and it was no secret he had CML. I think everyone knew from the

outset. This in no way diminishes anyone who does not want to reveal their

disease. Your secret is safe with me. LOL

The Komen foundation is recognized by Hollywood because some of the stars and

their familes have been impacted by breast cancer, it is much more prevelant.

There is also the matter of the BRCA gene. When they walk the red carpet,

people come out in droves to see the stars and they have their checkbooks with

them.

CML fundraising is not on the same scale. Maybe we need to brainstorm, but the

LLS is holding some back because they do not want you to raise money any way but

the way they propose and I think they are limiting themselves. Bobby can tell

you she used to raise money, but they said she couldn't have any more tea

parties, so when they discontinued that, they lost money. Bobby is a good fund

raiser in her own right. Now she donates her time and talent to other

organizations. Someone wrote recently, who said they raised the money the way

they wanted and just donated it to LLS, but they did not have the blessings of

LLS, nor did they know (I don't think so anyway). Why would they refuse money

that was raised if it was legitimate anyway?

FYI, (Happy Sunday)

Lottie Duthu

[Guest guest]

Hello, Bobby-

I am VERY new to this community (CML dx 6/29/10). I was fortunate to have been

diagnosed in chronic phase and have been on Sprycel therapy for app. 3 months.

My CBC's are very encouraging and I'll be having my 2nd BMA next week (I'm

keeping my fingers crossed). I'm beginning to feel almost 'normal' again,

despite a few well-known but fairly minor side effects from the medication.

Shortly after my dx I began to search for patient advocacy and support groups.

Naturally, the LLS was at the top of the heap and had a huge amount of

information and services available. However, I discovered that CML (presumably

because of its relatively low incidence) didn't get very much attention. I found

myself having to dig quite a bit to get to any useful material relating to my

particular condition.

Then I found the National CML Society in Birmingham. From the very first contact

they have been an invaluable resource to me and my family. I was privileged to

attend the first of a series of expert lectures and focus groups this past

weekend in Phoenix. I am now part of the organization and look forward to

helping other CML patients as much as I have been helped.

As I'm sure you know, fundraising is a crucial part of any support group's work.

I read your comments about the LLS' recent change in fundraising policies (and

must say that I've heard others mention similar things). I would encourage you

to consider the NCMLS as your beneficiary. I have seen firsthand that any money

donated is well spent on its intended recipients... CML patients. In just a few

days the NCMLS will be launching a totally re-vamped website

<www.nationalcmlsociety.org> that will revolutionize support of the CML

community.

Regardless of the means, thanks for your support. I have just started my CML

journey, but it gives me great comfort to know that there are people just like

me out there who are willing to help.

Sincerely,

Lee H. Spiva

Panama City, FL

2/1967

DX 6/2010

Sprycel trial 7/2010, MDACC

BMA 10/25/2010... crossing my fingers

, ROBERTA DOYLE <rcd1929@...> wrote:

>

> Hi, yes, I raised some bucks for LLS a few years back having tea parties.  I

raised $18,000.00.  But the fourth year when i called them for donation

receipts, they said they were " not doing tea parties anymore " they were finding

new ways to raise money.  I was really ticked, I meet ladies today that want to

know why I quit having them, (of course, truth be known, I didn't serve tea, I

served Mimosas!)

> Then this year I signed up for the Totally Baldacious fund raiser.  Gals,

keep in touch with your old boy friends, one of mine donated $200.00 and another

donated $100.00 !!  But, once again, when I emailed " the boss " for donation

forms for an idea I had, I was told right out, this fund raiser is for the

internet only, if I wanted to raise money other ways, I should call my local

office and discuss it with them...........

> Now I was really ticked.  I made most of the money at the tea parties selling

raffle tickets for a weekend away at any one of 50 Holiday Inns around the US,

two nights, etc.  So I thought with my new fund raiser, I would keep it local

and put together a weekend getaway in Cleveland.  I had already contacted a

hotel, a theater and a restaurant, the best in Cleveland, and they asked for a

certain form from LLS.  Well, I wrote for it  and the answer I got was this

was an internet fund raiser only. 

> I really didn't understand why I could not raise money at a huge fund raiser,

and donate it on line and have it accepted?  Money is money, who cares how it

is donated, if it ends up in the right place?  I had a list of people willing

to shave their heads, beards, and mustaches at my fund raiser, I had a place to

have it, I had live entertainment, free.  But I  have to tell you, maybe

because I am 80, getting a bit sensitive maybe?  I was just plain ticked off

and quit the whole idea.

> I am at present making scarves and hats again and selling them, two and three

years ago I made over $2,000.00 this way, gave half to Parkinson's and half to

LLS.   This time it is going to the Women's Auxilliary of the American

Legion.  I am in charge again this year of the bake sale and the poppy sale for

Memorial day, at the Legion,  and will be happy with the few hundred dollars it

raises.  They do good things also for the boys in the service.

> But truthfully, I am not happy about being put down by the LLS and fund

raising.  I know I should have had the fund raiser anyway, and sent this woman,

personally a huge check, but my heart is not in it anymore. Guess with age comes

pettiness?

> Now I hope this does not get me in trouble with the LLS?  perhaps I should

not mention their name?  but the truth is the truth, and maybe I just happened

to reach out to two different people at a bad time in their day, who knows?

>

> a ( Bobby ) Doyle, dob 12/17/29

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

>

>

> From: Lottie Duthu <lotajam@...>

> Subject: [ ] Staying in the Shadows

> " CML " < >

> Date: Sunday, October 17, 2010, 1:42 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Dear Leah,

>

> I like your analogy of the ripples in the pond, my mother used to say

something on that order, but I don't remember her exact words, she told me so

many things. in NY, I thought of you and your choice to remain silent

about your CML and that is o.k. for personal reasons, but if Leah is right,

Kareem is taking money from Novartis. O'Neal is washed up as an actor, but he

still has some star power and it was no secret he had CML. I think everyone

knew from the outset. This in no way diminishes anyone who does not want to

reveal their disease. Your secret is safe with me. LOL

>

>

>

> The Komen foundation is recognized by Hollywood because some of the stars and

their familes have been impacted by breast cancer, it is much more prevelant.

There is also the matter of the BRCA gene. When they walk the red carpet,

people come out in droves to see the stars and they have their checkbooks with

them.

>

>

>

> CML fundraising is not on the same scale. Maybe we need to brainstorm, but

the LLS is holding some back because they do not want you to raise money any way

but the way they propose and I think they are limiting themselves. Bobby can

tell you she used to raise money, but they said she couldn't have any more tea

parties, so when they discontinued that, they lost money. Bobby is a good fund

raiser in her own right. Now she donates her time and talent to other

organizations. Someone wrote recently, who said they raised the money the way

they wanted and just donated it to LLS, but they did not have the blessings of

LLS, nor did they know (I don't think so anyway). Why would they refuse money

that was raised if it was legitimate anyway?

>

>

>

> FYI, (Happy Sunday)

>

> Lottie Duthu

>

>

>

>

[Guest guest]

> Shortly after my dx I began to search for patient advocacy and support groups.

Naturally, the LLS was at the top of the heap and had a huge amount of

information and services available. However, I discovered that CML (presumably

because of its relatively low incidence) didn't get very much attention. I found

myself having to dig quite a bit to get to any useful material relating to my

particular condition.

*******************************************

I'm actually quite surprised to hear this because I was diagnosed almost 9 years

ago and found even back then that there was a plethora of support groups for

CML. Since then, there have been even more added to the list and I now find

that there are almost as many support groups for CML as there are patients.

Tracey

dx Jan 2002

[Guest guest]

Hi Lee,

Welcome to the club that nobody really wants to be a member of. Hoping to

enrol you in the Zero Club real soon.

I am surprised that you had so much trouble finding a CML support group. A

simple Google with `CML support` will get you most of them.

What trial are you in at MDACC. Is it for newly diagnosed patients and what

are they looking for.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of lhs922

Sent: October-19-10 12:50 AM

Subject: Re: [ ] Staying in the Shadows

Hello, Bobby-

I am VERY new to this community (CML dx 6/29/10). I was fortunate to have

been diagnosed in chronic phase and have been on Sprycel therapy for app. 3

months. My CBC's are very encouraging and I'll be having my 2nd BMA next

week (I'm keeping my fingers crossed). I'm beginning to feel almost 'normal'

again, despite a few well-known but fairly minor side effects from the

medication.

Shortly after my dx I began to search for patient advocacy and support

groups. Naturally, the LLS was at the top of the heap and had a huge amount

of information and services available. However, I discovered that CML

(presumably because of its relatively low incidence) didn't get very much

attention. I found myself having to dig quite a bit to get to any useful

material relating to my particular condition.

Then I found the National CML Society in Birmingham. From the very first

contact they have been an invaluable resource to me and my family. I was

privileged to attend the first of a series of expert lectures and focus

groups this past weekend in Phoenix. I am now part of the organization and

look forward to helping other CML patients as much as I have been helped.

As I'm sure you know, fundraising is a crucial part of any support group's

work. I read your comments about the LLS' recent change in fundraising

policies (and must say that I've heard others mention similar things). I

would encourage you to consider the NCMLS as your beneficiary. I have seen

firsthand that any money donated is well spent on its intended recipients...

CML patients. In just a few days the NCMLS will be launching a totally

re-vamped website <www.nationalcmlsociety.org> that will revolutionize

support of the CML community.

Regardless of the means, thanks for your support. I have just started my CML

journey, but it gives me great comfort to know that there are people just

like me out there who are willing to help.

Sincerely,

Lee H. Spiva

Panama City, FL

2/1967

DX 6/2010

Sprycel trial 7/2010, MDACC

BMA 10/25/2010... crossing my fingers

<mailto:%40> , ROBERTA DOYLE

<rcd1929@...> wrote:

>

> Hi, yes, I raised some bucks for LLS a few years back having tea parties.Â

I raised $18,000.00. But the fourth year when i called them for donation

receipts, they said they were " not doing tea parties anymore " they were

finding new ways to raise money. I was really ticked, I meet ladies today

that want to know why I quit having them, (of course, truth be known, I

didn't serve tea, I served Mimosas!)

> Then this year I signed up for the Totally Baldacious fund raiser. Gals,

keep in touch with your old boy friends, one of mine donated $200.00 and

another donated $100.00 !! But, once again, when I emailed " the boss " for

donation forms for an idea I had, I was told right out, this fund raiser is

for the internet only, if I wanted to raise money other ways, I should call

my local office and discuss it with them...........

> Now I was really ticked. I made most of the money at the tea parties

selling raffle tickets for a weekend away at any one of 50 Holiday Inns

around the US, two nights, etc. So I thought with my new fund raiser, I

would keep it local and put together a weekend getaway in Cleveland. I had

already contacted a hotel, a theater and a restaurant, the best in

Cleveland, and they asked for a certain form from LLS. Well, I wrote for

it and the answer I got was this was an internet fund raiser only.Â

> I really didn't understand why I could not raise money at a huge fund

raiser, and donate it on line and have it accepted? Money is money, who

cares how it is donated, if it ends up in the right place? I had a list of

people willing to shave their heads, beards, and mustaches at my fund

raiser, I had a place to have it, I had live entertainment, free. But IÂ

have to tell you, maybe because I am 80, getting a bit sensitive maybe? I

was just plain ticked off and quit the whole idea.

> I am at present making scarves and hats again and selling them, two and

three years ago I made over $2,000.00 this way, gave half to Parkinson's and

half to LLS.  This time it is going to the Women's Auxilliary of the

American Legion. I am in charge again this year of the bake sale and the

poppy sale for Memorial day, at the Legion, and will be happy with the few

hundred dollars it raises. They do good things also for the boys in the

service.

> But truthfully, I am not happy about being put down by the LLS and fund

raising. I know I should have had the fund raiser anyway, and sent this

woman, personally a huge check, but my heart is not in it anymore. Guess

with age comes pettiness?

> Now I hope this does not get me in trouble with the LLS? perhaps I

should not mention their name? but the truth is the truth, and maybe I

just happened to reach out to two different people at a bad time in their

day, who knows?

>

> a ( Bobby ) Doyle, dob 12/17/29

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

>

>

> From: Lottie Duthu <lotajam@...>

> Subject: [ ] Staying in the Shadows

> " CML " < <mailto:%40> >

> Date: Sunday, October 17, 2010, 1:42 AM

>

>

>

>

>

>

>

> Â

>

>

>

>

>

>

>

>

>

> Dear Leah,

>

> I like your analogy of the ripples in the pond, my mother used to say

something on that order, but I don't remember her exact words, she told me

so many things. in NY, I thought of you and your choice to remain

silent about your CML and that is o.k. for personal reasons, but if Leah is

right, Kareem is taking money from Novartis. O'Neal is washed up as an

actor, but he still has some star power and it was no secret he had CML. I

think everyone knew from the outset. This in no way diminishes anyone who

does not want to reveal their disease. Your secret is safe with me. LOL

>

>

>

> The Komen foundation is recognized by Hollywood because some of the stars

and their familes have been impacted by breast cancer, it is much more

prevelant. There is also the matter of the BRCA gene. When they walk the red

carpet, people come out in droves to see the stars and they have their

checkbooks with them.

>

>

>

> CML fundraising is not on the same scale. Maybe we need to brainstorm, but

the LLS is holding some back because they do not want you to raise money any

way but the way they propose and I think they are limiting themselves. Bobby

can tell you she used to raise money, but they said she couldn't have any

more tea parties, so when they discontinued that, they lost money. Bobby is

a good fund raiser in her own right. Now she donates her time and talent to

other organizations. Someone wrote recently, who said they raised the money

the way they wanted and just donated it to LLS, but they did not have the

blessings of LLS, nor did they know (I don't think so anyway). Why would

they refuse money that was raised if it was legitimate anyway?

>

>

>

> FYI, (Happy Sunday)

>

> Lottie Duthu

>

>

>

>