Re: ALS-Ribbons/My project

[Guest guest]

Sonja,

Here is a toll free number to call: VISA/MasterCard

Orders may call toll-free 1-

If you are unable to purchase them, let me know how

many you want, etc. and I'll see what I can do.

The book sounds very interesting. I would love to be

able to purchase a copy when it is completed. Please

keep us up to date.

Did you read about the new gene discovery that Dr.

Siddique made? I believe it would be of benefit to

you to contact Dr. Siddique if you haven't already

done so. The discovery is for the ALS2 gene that is

responsible for slow progressing,early onset ALS and

Juvenile PLS. Let me know if you need more info.

Also, do you think next year would work for coming to

the US for a visit? I am still trying to work out the

details for a San Diego, CA meeting next fall.

Probably late September, early October. Let me know

what might work for you.

--- sonja.balmer@... wrote:

> Hi my friends,

>

> Here is Sonja from Switzerland. I have a great

> " problem " . I was in a

> great and famous TV-Show in Switzerland and explain

> about my

> philosophy and my slowly progressed ALS. My

> neurologist was also

> there. It was so good and the reaction from the

> people was so great

> that we did make as follow:

> The last weeks, I wrote a book with poems, songs,

> paintings and

> philosophic lyrics about living with a disease like

> a motor neuron

> disease. My neurologist wrote the acknowledgement

> and the very famous

> TV-doc from our health-Tv wrote the preface. It is

> my greatest dream-

> to write a book and can give my thoughs to all

> people. The name of my

> book will be " Thoughs are fruits " (Thoughs bear

> fruits) -Philosophic

> letters and poems to a chronic disease.

> At December we make a lot of TV-Shows for explain

> what is ALS, what

> is PLS and to disscuse about my live-philosophy.

> They said that my

> philosophy is a great one. It is very important that

> we make this

> project in Switzerland because in contrast to

> Germany or USA is in

> our country ALS an unknown disease.

>

> Now, I saw on a website called " ALS March of Faces "

> that it gives

> ribbons, they are blue-white.

> www.march-of-faces.org/ribbons/

> But I don't know if I can order it because I come

> from Switzerland.

> Can you help me? Do you have connections to a such

> firm? I must be

> have some ALS-ribbons for our project.

>

> Thank you very much...

>

> your friend Sonja

>

>

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

Hi ,

Very nice to hear you! I didn' have a VISA or master card-so bad. And

my other problem is that I can not good speak english. (I am shie

because it is an other speaking).

I must have a lot of ribbons. I must have 5 Pins like the article

number PIN-X for 5 dollar/piece. And I must have 100 Ribbons like the

article number RIB-C for 0,50 dollar/piece. If it is possible I can

pay it by my banc. Maby, you can help me.

Yes, I did see the article from Dr. Siddeque. I didn't contacted him

yet. But I would like to contact him. You know, my speaking english

is bad. Do you have his email? Can I tell him about my history and

examinations? What can I said him?

I think, that I will come next year at october because at this time

my condition is not the best. I was in Germany (Berlin) and just 9

hours train I was a wrack!!! I will be very pleased to meet you all.

Did you contact Christian, my friend? I didn't hear something about

him since weeks. I don't know what is with him. I think, I must take

a phone with him.

Thank you for your help. It is very great!

Sonja

[Guest guest]

I will be happy to order the pins and ribbons and

forward them on to you. Please let me know where to

send them and how fast you might need them.

The best thing is to email Nailah Siddique about your

situation.

Nailah Siddique RN MSN

Clinical Nurse Specialist

Neuromuscular Disorders Program

Northwestern University

e-mail: nsiddique@...

Just tell her your brief history and ask if they would

want to use your blood in the study. I think they are

very interested in early onset. Nailah will tell you

what she needs. It is important for them to get all

the blood they can, so they can hopefully find more

answers to the ALS and PLS questions.

I haven't contacted Christian yet, keep meaning to do

so. I promise I will do it soon. I hope your health

improves so you can come next fall. I would love to

meet you in person. I'm sure others would like to

meet you also.

Take care and let me know on the pins/ribbons.

--- sonja.balmer@... wrote:

> Hi ,

>

> Very nice to hear you! I didn' have a VISA or master

> card-so bad. And

> my other problem is that I can not good speak

> english. (I am shie

> because it is an other speaking).

> I must have a lot of ribbons. I must have 5 Pins

> like the article

> number PIN-X for 5 dollar/piece. And I must have 100

> Ribbons like the

> article number RIB-C for 0,50 dollar/piece. If it is

> possible I can

> pay it by my banc. Maby, you can help me.

>

> Yes, I did see the article from Dr. Siddeque. I

> didn't contacted him

> yet. But I would like to contact him. You know, my

> speaking english

> is bad. Do you have his email? Can I tell him about

> my history and

> examinations? What can I said him?

>

> I think, that I will come next year at october

> because at this time

> my condition is not the best. I was in Germany

> (Berlin) and just 9

> hours train I was a wrack!!! I will be very pleased

> to meet you all.

> Did you contact Christian, my friend? I didn't hear

> something about

> him since weeks. I don't know what is with him. I

> think, I must take

> a phone with him.

>

> Thank you for your help. It is very great!

>

> Sonja

>

>

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

,

It would be very nice, if you order the pins and ribbons for me and

forward them to me.

I saw them on the website www.march-of-faces.org/ribbons

I must have as following:

- Pins with the order code: PIN-X, QTY: 10, Price: 5 dollar/piece

- Ribbons with the order code: RIB-C QTY: 100, Price: 0,5 dollar/piece

My adress is:

Sonja Balmer

Luzernstrasse 24 b

4553 Subingen

Switzerland

Can I pay it by your bank? You can mail me your bank account with the

price you have been pay for them: sonja.balmer@...

I will contact Nahlia Sideeque. But I must take time for it, because

its need a lot of time for writing a so important letter. Maby I will

ask my neurologist, if he write a letter to Dr. Sideeque to. I think

it is very important!

My book will be print next week. It will have 3000 copies. If you

would like, I can forward you one. But it is in Germany. I can help

you for understanding it. It is not a so difficult Germany. The book

have songs, poems, paintings and philosophic words.

I hope, thats not asking too much for you. (Hope, you understand it.)

Thank you so much for your helping. In our country is ALS and PLS not

known like US. And you help a lot of for give us in Switzerland a

chance. Switzerland is a good country, but if you are outsider, you

feeling it in the mental live styling.

Sonja

[Guest guest]

Sonja,

I phoned the order in for the pins and ribbons. They

will call me back later today with the shipping

charges as they are going to mail them directly to

you.

They were interested in what you plan to do with them.

I told them I thought they might be included with

some of the books? Is that correct? They said they

would like to see the book when it is printed.

I'll let you know later today what the total charges

will be and give you my bank info.

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

,

Thank you so much for taking trouble for me.

The ribbons are for my projekt. I will have 7 TV-entrances with my

neurologist. We will talk about ALS and my live-philosophy. We will

introduce and discuss my book. I think some people will present theyr

connection and solidarity with me and ALS/PLS. And this ribbons are

for them. I think, we wouldn't sell the ribbons. They are for peoples

who buy a book ore for others they present theyr solidarity. I will

give a Pin also to my neurologist and the TV-doc for present theyr

solidarity while the TV-Show. It would be that we must have more such

Ribbons but for this moment it is good with 100 piece. At this moment

I haven't money for pay such pieces like the 3000 copies of my book.

The book will print next week. I don't know when the book printing

will be finished. But I think beginning or middle December. We print

only 3000 copies because we don't have so much dollars. Its costs a

lot of many! My greatest whish is to translating the book from German

to english. My neurologist wrote that it is a book that cover the

border beetwin to be sick and healthy. It is a book for all people.

When the book is printed, I can forward an exemplare to you and them.

What will they do with it? Do you know?

OK, thank you and hear you later....

Sonja

[Guest guest]

Sonja,

Congratulations for all your accomplishments. I would love to read your

book when it is translated into English. Keep up the good work! I wish I

could be as talented and motivated to write a book. Good job! Take care and

be well.

Sue Niquette

ALS-Ribbons/My project

> Hi my friends,

>

> Here is Sonja from Switzerland. I have a great " problem " . I was in a

> great and famous TV-Show in Switzerland and explain about my

> philosophy and my slowly progressed ALS. My neurologist was also

> there. It was so good and the reaction from the people was so great

> that we did make as follow:

> The last weeks, I wrote a book with poems, songs, paintings and

> philosophic lyrics about living with a disease like a motor neuron

> disease. My neurologist wrote the acknowledgement and the very famous

> TV-doc from our health-Tv wrote the preface. It is my greatest dream-

> to write a book and can give my thoughs to all people. The name of my

> book will be " Thoughs are fruits " (Thoughs bear fruits) -Philosophic

> letters and poems to a chronic disease.

> At December we make a lot of TV-Shows for explain what is ALS, what

> is PLS and to disscuse about my live-philosophy. They said that my

> philosophy is a great one. It is very important that we make this

> project in Switzerland because in contrast to Germany or USA is in

> our country ALS an unknown disease.

>

> Now, I saw on a website called " ALS March of Faces " that it gives

> ribbons, they are blue-white. www.march-of-faces.org/ribbons/

> But I don't know if I can order it because I come from Switzerland.

> Can you help me? Do you have connections to a such firm? I must be

> have some ALS-ribbons for our project.

>

> Thank you very much...

>

> your friend Sonja

>

>

>

>

>

>

>

>