Topic: LETTERS*LETTERS*LETTERS* HELLO OPRAH

This is your daily reminder to get those letters to Lainy (Caretaker) and Sophie (Patients) so that we can send at least 50, yes 50 to the Oprah Show. If just a quarter of our members sent a letter, CAN YOU JUST IMAGINE the impact? You have until September 15th for your 1 page letter.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: LETTERS*LETTERS*LETTERS* HELLO OPRAH

Lainy,

OK, I have stupid questions:

I am stumped. I really want to write a letter, but I have no idea how to start, what to say.  I mean, I know what I have gone through, but how detailed do I get? 

So far, I am doing fine, beating the odds (next CT scan is Tuesday, the nerves are ramping up...).  Do you still want my letter? 

Or do you think the effort to get recognized would work better if you only have letters from people who need more research TODAY?

Actually, I suppose that if the I am realistic. I WILL need that research, and I would want it to be done TODAY so I could use it in the future. 

But, I am still at a loss where to start.  Would it be possible (without prying into people's privacy) to publish on this site, small quotes from some of the letters you have received? I am not asking out of curiosity and nosiness, but out of a true desire to help, and not being able to figure out how.

Sorry to be such a dunce.  Thanks for any help.  I am trying to get this done!
Sue

Today is a new day. Congratulations, you are already a survivor!

Re: LETTERS*LETTERS*LETTERS* HELLO OPRAH

You will need to convey briefly what you have experienced (1 page limit) and more important what disaster it has played on you and family. Here are some short sentences from letters I have received:  "I am a very scared and angry daughter", "why is so little being done to find a cure", "our cause is a forgotten one", "there is a need to advocate for research", "will our insurance pay for it?", "as a caretaker my health has  suffered", "no symptoms, it just appeared".
Hope this helps. Just basically write what you feel.
And fun seekers?  This will be your reminder for today!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: LETTERS*LETTERS*LETTERS* HELLO OPRAH

Also, we don't know what causes cc.

Re: LETTERS*LETTERS*LETTERS* HELLO OPRAH

Hey Lainy, I have only gotten 3 letters, and they are long.  One is five pages.   Let's keep it to one page, dear friends, and try to insert something about orphan diseases to give Oprah some meat on this skeleton.  She could tie an entire program into cc and a little something about other diseases. 

Love and prayers for you all,
Sophie

Re: LETTERS*LETTERS*LETTERS* HELLO OPRAH

HI SOPHIE!!!!!!!!!!!!!!!!!!!!   Good to see you!  We have been worried about you!!!  I am up to 6 letters. We do have 10 more days so lets hope every has a spark of energy this weekend and you are so right about putting in about CC
being an Orphan and also I have put n every reminder that it should be 1 page.
I am just so excited to see you back on I don't know what else to say! You go girl!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.