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RE: [IP] A reply to Melissa's letter - great job, Melissa!

Melissa this is a great letter it hit a note when you wrote about how will
you tell your child about their diabetes. My daughter is three years old and
I'm still trying to find the right words when she starts asking. Pretty soon
she will notice the rest of the kids being "normal" and ask me why she has
to do the routine and not them. I wonder what the future holds for my little
girl and I can't avoid thinking about the complications. It's hard to think
what the future might hold for her with her diabetes but I try not to think
about those complications.

-----Original Message-----
From: Susan and Bob Thompson [mailto:email @ redacted]
Sent: Wednesday, February 07, 2001 6:53 PM
To: email @ redacted
Subject: [IP] A reply to Melissa's letter - great job, Melissa!

Sorry - I'm new and I goofed somehow.  I sent this on Sunday but to the
wrong email address.  Here is it again.  Important in it is also what you
can do to help our DIABETES cause to get funding in Congress as told in the
DIABETES FORECAST magazine.  Thanks!

> Hi, Melissa (and all of the rest of you folks out there!!
> I'm new to the insulin pumpers' group and loved your letter below. 
> add my name (Susan Thompson, diabetes 33 years) to the list.  You asked
> any improvements to the letter.  First, I'd say it's very important to
> it up with as many facts as possible - it's good for you to mention that
> diabetes is the number one cause in our country for kidney disease,
> blindness, and heart attacks.  You might need to research this next fact,
> but I was also once told that there is nearly 10 times more money put
> research for AIDS which affects far fewer people in this country, and the
> TOTAL number of deaths of AIDs-afflicted persons since 1969 or so is
> approximately the number of deaths associated with diabetes EVERY YEAR. 
> don't know how factual that is, but my source was reliable and in
> research himself, so that fact must be out there somewhere!
> I hope I'm not being too bold - but since I have been an editor for 15
> years, I went ahead and made editorial changes (small - typos, hyphens,
> spellings, a phrase here and there etc.) to the letter below.  If you
> them, you can copy and paste this copy perhaps?  I hope it helps!   Can
> each send copies to Bill Gates, too, then?  I'm not sure I understand
> action I need to take.
> Thanks.
> Also, a BIG P.S. which might add to your letter, Melissa - "Diabetes
> Forecast" magazine is calling on any and everyone to send a letter to the
> Speaker of the U.S. House of Representatives, Dennis Haster, who can play
> key role in ensuring that Congress provides the National Institutes of
> Health with the money and direction needed to implement the Diabetes
> Research Working Group's (DRWG) scientific recommendations in diabetes
> research each year.  They said to write him and send ADA a copy, so ADA
> forward it to your Representative in Congress.
> ADDRESSES:Honorable Deniss Hastert, Speaker of the House, Washington, DC
> 20515
> ADA Advocacy Manager, 1701 N. Beauregard St, Alexandria, VA 22311
> Suggestions for writing:  Diabetes research funding is far below the
> recommendations and these recommendations are not being met although they
> were supported fully with more than 3.2 million signatures last year,
> Government spending on diabetes is only 1 percent on research and 99
> percent on treatment, the NIH budget spend only 2.9 percent of its budget
> on diabetes - and tell why diabetes is important to you and your family.
> Susan Thompson
> ----------
> > From: Melissa Howell <email @ redacted>
> > To: email @ redacted
> > Date: Sunday, February 04, 2001 5:12 PM
> >
> >
> > If you would like to add your signature to the letter TO BILL GATES,
> > follow these instructions:
> >
> > Send a message to:
> >
> > email @ redacted
> >
> > The message should contain ONLY your name, where you live and how
> > long you or your loved one has had diabetes. Here's what mine looks
> > like.
> >
> > Michael Robinton, Lily's dad, Palo Alto, CA, Lily - diabetic 7 years
> > or
> > Melissa Howell, North Carolina, diabetic for 12 years
> >
> > Here is the letter-please feel free to make any comments about how I
> > make the letter sound better.  When I started typing this letter I
> > have made it 100 pages and still have more to say.  It was also very
> > important to me to be able to include the feedback that you all have
> me
> > over the past week.  So if you see some of your own writings in here-it
> was
> > done on purpose. :)
> > Keep in mind that the goal was to hit the high points of Diabetes and
> show
> > Mr. Gates and whomever else might receive this letter that diabetes
> research
> > and development needs financial help.  Keep an open mind and heart
> > reading this-
> > Thank you,
> > Melissa
> > ************************
> >
> > Hi, I would like to introduce myself. My name is Melissa Howell. I live
> in a
> > small town in North Carolina. To an outsider I am just a normal
> 22-year-old
> > female. There is something that meeting me face-to-face would
> > not be evident to you about me. I have a disease that affects every bit
> of my daily
> > routine and nearly every part of my body.  This cruel disease requires
> attention every minute of the day and leaves me with a very
> uncertain future - one most likely filled with complications because
> is no treatment to
> cure my disease. I cannot
> > wake up in the morning without thinking about it, eat without thinking
> about
> > it nor drive without thinking about it. I cannot walk to the park with
> > child without thinking about it, work out at the gym without thinking
> about
> > it, clean the house without thinking about it nor cook dinner without
> > thinking about it. I can't do anything without thinking about it long
> > hard.
> >
> > Many people in our country take these activities for granted. When most
> people have an
> > errand to run, they do just that - jump in the car and go. Well, for me
> (and millions of other
> similarly afficted Americans)  it's a
> > step-by-step procedure that must be performed first just to be able to
> drive. I
> > must first stick my finger with a needle to test how much glucose is in
> my
> > blood. Depending on that number, I decide if I am ABLE to drive. If I
> have
> > too much glucose I must take a shot or other form of treatment to bring
> my
> > level down to "normal". If I am too low, I must eat
> > food - a certain measured amount of food. Then I have to wait for my
> to
> > absorb the glucose in the food before I drive anywhere. Then I must
> > sure that I am prepared all the time. I must have my glucose-reading
> meter with me
> > at all
> > times along with things to eat if my glucose drops too low.  I must
> be prepared with
> > needles and insulin or other treatment supplies in case I go too high.
> > This is just the beginning of it, Mr. Gates. Do you see what myself and
> 135
> > million people worldwide must go through everyday just to drive to the
> > grocery store? Something that most take for granted.  For 12 years I
> > been battling a disease that effects an estimated 135 million people
> > worldwide and 16 million Americans.
> >
> >
> > This disease affects individuals every second, every minute, every day
> > the week, 12 months a year. There is no break. It also shortens lives.
> The
> > long-term complications of diabetes include blindness, kidney failure,
> nerve
> > damage, and vascular disease. In fact, diabetes is the number one cause
> in our country of
> kidney disease, blindness, and heart failures.  Good control is not a
> guarantee against
> > developing these complications. I try my hardest to stay under the
> tightest
> > control but I am now realizing that even all of the carbohydrate
> of
> > my foods, even all of the finger sticks I perform daily, all of the
> shots,
> > sleepless nights with high or low glucose levels will not prevent me
> > these complications.
> > This disease needs help in its research and development area. There is
> much that can be done - and so many potential solutions are on the cusp
> discovery.  The costs to
> > treat diabetes is outrageous. A lot of people cannot afford to maintain
> > treatment for this disease and some insurances are not covering as much
> as they should.
> > The bottom line is that there is no cure and without that, there is so
> much loss..
> > None of us have asked for this disease. It was just GIVEN to us. Your
> wife, daughter or even yourself might develop
> > this disease tomorrow and have never done anything to deserve it. I do
> not
> > wish diabetes on anyone, but those of us who suffer from it have no
> choice. I
> > didn't ask for it. I did not do anything to deserve it. It just struck
> > and it can strike anyone at any given moment. It will change every
> of
> > a persons life forever as it has mine. Diabetes can be diagnosed at any
> age
> > in life.  From infant to elderly. Can you imagine having to give your
> child
> > shots everyday? Measuring food, sticking your child's fingers to obtain
> > blood everyday. How about telling a child that he/she is different from
> the
> > other children. Explaining why he may never know what a candy bar
> > like. How do you comfort a child who is asking why he has diabetes? How
> do
> > you explain why his food has to be measured, glucose level checked and
> > shot given before he eats anything, and then his glucose level
> if
> > he can even eat or not.
> >
> > All that I am asking for in this letter is that you will look at the
> > for research in diabetes with an open heart. The death rate from
> > has risen by 30 percent since 1980 yet spending on diabetes research
> > fallen. There are several areas of research that offer great promise if
> we
> > could get the proper funding. 200,000 Americans die every year from
> > diabetes. Knowledgeable sources have told me that this number equals
> number of deaths
> from AIDS over DECADES -- yet AIDS research is given 10 times the
> diabetes research
> is given per person that it affects.  Diabetes costs $100 billion in
> medical care and other expenses
> > every year. Right now there are several promising avenues towards a
> > None of this can be accomplished without will or funding.
> >
> > I applaud your contribution to funding for researching in other areas
> such as
> > AIDS, but diseases with less glamorous
> > reputations need research dollars too.
> >
> > Below are some of my friends from the Insulin Pumpers
> > (email @ redacted ) list.
> > They are a few of the many out there who have this disease. Some are
> 1
> > and some are Type 2 and some are a combination of both. Granted the
> > researchers have come a long way with the treatment of diabetes, but we
> are
> > still living with this disease on a day-to-day basis and wanted to make
> you
> > aware of the problem. A bigger voice than ours alone is
> > needed to raise funding for a CURE for this disease and we were hoping
> > might be yours.
> >
> > Sincerely yours,
> >
> > Melissa Howell (North Carolina, diabetic for 12 years)
> > Dauna Breiding (Ohio, diabetic for 28 years)
>  Susan Thompson (Maryland, diabetic for 33 years)
> > Insulin Pumpers web site http://www.insulin-pumpers.org
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