Re: Mito & MacArthur Fellow

[Guest guest]

On the basis of what I read about this man, I sent the following email to

him. I don't know if it was appropriate, and I would welcome any feedback on

that point. I'm feeling a bit insecure about doing this, but.....

-Steve

------------------

Hi

You don't know me. Nonetheless, congratulations on your recent MacArthur

Fellowship. I expect you've been having one heck of an exciting week.

I was especially interested to read (Harvard Gazette) " His initial thoughts

are to investigate some rare mitochondrial disorders, about which so little

is known that diagnosing and treating them are a challenge for doctors. " I

certainly agree. I've had two major surgeries to (unsuccessfully) remove

massive lipomas on my scalp, neck, shoulders, upper back, and cervical

spine, before either of the two surgeons even knew what it is I have,

exactly. And yes, my doctors have been, and are, very much challenged in my

treatment.

Turns out I have Multiple Symmetrical Lipomatosis (MSL also known as

Madelung's Disease) which is a VERY rare (about 200 cases worldwide)

mitochondrial disorder of unknown origin (but there are hints). I live on

Cape Cod, about 90 minutes from Boston. I offer myself to you for your

clinical research. I won't overwhelm you now, but I can supply further

information about my particular symptoms (including severe peripheral

neuropathy, extreme exercise intolerance, horrible constant headaches, and

more) and also some links to articles (medical journals) regarding MSL.

Please keep my contact info on file should this interest you in the future.

Again, congratulations and best wishes.

Regards

Steve Duerksen [other contact info]

------------------------------

> Date: Sat, 02 Oct 2004 19:23:17 -0500

>

> Subject: Mito & MacArthur Fellow

>

>

> Mitoldies,

>

> Have you heard the news? A harvard professor who studies mitochondria

> just received a $500,000 MacArthur award to continue his

> research.....very exciting! See the article below. Best wishes, Beth

> Schuman (complex II abnormality in Maine) (I don't get postings, too

> much to read/keep up with but did want to send this on...)

>

> http://www.news.harvard.edu/gazette/2004/09.30/01-macarthur.html

[Guest guest]

Good for you....

Gillian

> On the basis of what I read about this man, I sent the following

email to

> him. I don't know if it was appropriate, and I would welcome any

feedback on

> that point. I'm feeling a bit insecure about doing this, but.....

> -Steve

> ------------------

> Hi

>

> You don't know me. Nonetheless, congratulations on your recent

MacArthur

> Fellowship. I expect you've been having one heck of an exciting

week.

>

> I was especially interested to read (Harvard Gazette) " His initial

thoughts

> are to investigate some rare mitochondrial disorders, about which

so little

> is known that diagnosing and treating them are a challenge for

doctors. " I

> certainly agree. I've had two major surgeries to (unsuccessfully)

remove

> massive lipomas on my scalp, neck, shoulders, upper back, and

cervical

> spine, before either of the two surgeons even knew what it is I

have,

> exactly. And yes, my doctors have been, and are, very much

challenged in my

> treatment.

>

> Turns out I have Multiple Symmetrical Lipomatosis (MSL also known

as

> Madelung's Disease) which is a VERY rare (about 200 cases

worldwide)

> mitochondrial disorder of unknown origin (but there are hints). I

live on

> Cape Cod, about 90 minutes from Boston. I offer myself to you for

your

> clinical research. I won't overwhelm you now, but I can supply

further

> information about my particular symptoms (including severe

peripheral

> neuropathy, extreme exercise intolerance, horrible constant

headaches, and

> more) and also some links to articles (medical journals) regarding

MSL.

>

> Please keep my contact info on file should this interest you in

the future.

> Again, congratulations and best wishes.

>

> Regards

>

> Steve Duerksen [other contact info]

> ------------------------------

>

> > Date: Sat, 02 Oct 2004 19:23:17 -0500

> > From: es

> > Subject: Mito & MacArthur Fellow

> >

> >

> > Mitoldies,

> >

> > Have you heard the news? A harvard professor who studies

mitochondria

> > just received a $500,000 MacArthur award to continue his

> > research.....very exciting! See the article below. Best wishes,

Beth

> > Schuman (complex II abnormality in Maine) (I don't get postings,

too

> > much to read/keep up with but did want to send this on...)

> >

> > http://www.news.harvard.edu/gazette/2004/09.30/01-macarthur.html

[Guest guest]

Dear Steve,

Thank you for stepping forward, on behalf of all of us, really. The more

human mito faces the researchers see, the better. Spending one's

professional life just amongst the test tubes is just not the same as

getting to see mito in the flesh.

I hope that this researcher will respond to you.

Sincerely,

S.

PA