Don,

It is Idelle at SCAN, not me, who has not had a good day since 1978.  She
has MS and was writing about Christmas and New Years wishes to people who
are not going to get well.  In 1979 I had ovarian cancer so my last 27 years
have not been so great either (11 with PD).

You are certainly the longest surviving person with PD I know of and are an
inspiration to all of us on this List.

I don't believe stem cells are going to help me, but see no good reason why
science should be stopped.  I think someday they will help someone.

Hoping to hear from you again next year.
Ray.



----- Original Message -----
From: "Don McKinley" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, December 30, 2006 9:27 AM
Subject: Re: Wish from Idelle at SCAN


> ----- Original Message -----
> From: "rayilynlee" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, December 29, 2006 11:28 AM
> Subject: Wish from Idelle at SCAN
> RAYILYNLEE I DO NOT KNOW HOW TO ANSWER U AS I SAID I WILL BE 83 PWP 39
> YEARS
> I NEVER ASKED ANY 1 WHAT THEY BELIED U GOT 1 STEM CELL IT WONT HELP ME I
> NEVER SAY THE MEDS I TAKE ALL I ASKED WS TO HAVE BELIE IN SOME TING THE
> NEW
> THING THAT IS HEADD FOR ME I WILL NEVER KNOW U SAY SINCE 1978 U NOT SAW A
> GOOD DAY ME GOOD DAY IS TO SEE THE WORLD AGAIN ME I SAY HAVE HAVE THE BEST
> OF THE YEAR U CAN LOT LAUGH AT ME OTHER SAY U SAY FUNEST THING AND THE
> BEST.
> ALL I CAN TELL U HOPE TO C U ON LINE NEXT YEAR AT THIS TIME GOOD OR BAD WE
> A
> LIVE SO TILL THEN IN JOY WHAT U LIVE GIVES   (flash)
>
>> SCAN UPDATES:
>> - We are putting the finishing touches on StemBlog, the site to network
>> advocacy groups. We have already signed up eight organizations, and will
>> begin a campaign to enlist many more partners. Go to www.stemblog.net and
>> take a peek. Want to suggest a group to become part of the network?
>> Contact
>> me at [log in to unmask] with their web address. If you are part
>> of
>> such a group, please contact me to ask any questions.
>> - We have received two excellent nominations for SCAN's "Advocacy
>> Champions
>> of 2006". Please send the names to me of other individuals who have
>> tirelessly served our cause during the past year.
>> - We will be sending out the names of members of the House of
>> Representatives and a sample letter to target for HR 810.
>> - Please include SCAN in your end-of-year list of donations.
>> Thank you.
>>
>> December 29, 2006
>> Dear SCAN Members,
>> We're all probably familiar with the dilemma of is it OK to say 'Merry
>> Christmas' or should I be inclusive and just say 'Happy Holidays'?. Well,
>> if
>> you've figured out how you want to handle that one, don't relax just yet
>> because I've got another one for you to chew on. Is it OK to wish me a
>> "Happy and Healthy New Year" when I haven't had a healthy year since
>> 1978,
>> and don't think that the state of my health is going to dramatically
>> improve
>> in '07?
>> The political correctness argument that is the source of the "Don't say
>> "Christmas", say "Holidays" quarrel concerns the risk of seeming
>> insensitive
>> to differences when one communicates with someone, who, for example, is
>> not
>> a Christian. In a similar way, is it appropriate or considerate to wish
>> me,
>> or the millions of others with life-threatening diseases, a "Healthy New
>> Year"? It's a lovely thought, but to smile and accept it graciously we
>> are
>> required to collude with either the outright denial of our condition or
>> accept the vague idea that somehow, something magical might happen to
>> make
>> this wish come true.
>> The truth is that I was pretty resigned to being a good sport and to keep
>> quiet during all the years when there wasn't much hope of a treatment or
>> cure in the cards. But now, when stem cell research has put many of the
>> key
>> puzzles of basic science on the working agenda instead of "for dreamers
>> only" I find that passivity isn't so comfortable anymore.
>> I do understand that the wish is well-intentioned, but as a non-Christian
>> I
>> often feel uneasy accepting Christmas wishes; as a person with multiple
>> sclerosis, I appreciate the thought of a healthy year, but the wish feels
>> hollow, misplaced. I'd prefer that the well-wishers think more carefully
>> about what it's like to live with a serious illness, every day, and to
>> have
>> to stand by and watch while politicians make decisions that affects the
>> funding and thus the time frame of treatments, even cures.
>> So what's the better choice?
>> - Instead of sending me a card, donate the cost and the postage to
>> research.
>> - Ask me how you can help.
>> - Be informed about the laws in your state that support research or limit
>> it.
>> - Write letters to Congress when asked.
>> - Get involved: exchange empty wishes for targeted advocacy.
>> -  Don't ask me to pretend that I'm just like you, when I'm not.
>> And by the way, here is my number one wish for '07:
>> I wish that everyone with an illness that could be helped by stem cell
>> research finds a way to connect with the rest of the 100 million
>> potential
>> beneficiaries and that together we create a force to be reckoned with.
>> Do you think this can be done? Let me know.
>> Idelle Datlof
>> Executive Director
>> Stem Cell Action Network
>>
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