Sounds and looks great. Wonder how much to rent and about durability...
http://trilogy100.respironics.com/features.aspx

--- In dmdpioneers@yahoogroups.com, Jeff Petrie <woxybuzz@...> wrote:
>
> Not yet, but I really want to. Have you tried it? Right now Apria
> doesn't carry it so I'm waiting on them. I contacted both Apria and
> Respironics. Hopefully that will help things along. It sounds like a
> great little machine. It's only about 4.5" x 7" x 9" and 11 lbs. It also
> carries two batteries that just slide in and out. Each battery is
> supposed to last 8 hours a piece and I heard the internal battery lasts
> over an hour.
>
> Jeff Petrie
>
> Christopher Willmer wrote:
> >
> > Has anyone tried the Respironics Trilogy 100 vent yet?
> >
> >
>

I was not specifically addressing DMD coverage or claims in that post. I was
addressing overall medical claims. I don't know about most, but when I had
private insurance (such as MetLife and Blue Cross) they were very good about
claims having to do with DMD. I just have Medicaid now because I lost the
private when my Dad's work closed it's doors a couple years back. This
healthcare bill is going to put even more of a strain on Medicaid, not help the
program....

--- In dmdpioneers@yahoogroups.com, Nick Dupree <nick@...> wrote:
>
> Medicaid will cover the care for the complications of DMD (ventilators,
> home care, etc.) when private insurance never will. Private insurance
> has no interest in us, there's no profit in DMD.
>
> Argument over.
>
>
>
> Lee wrote:
> >
> >
> >
> > If I'm not mistaken, Medicare/Medicaid denies more claims than private
> > insurance. People always mention the fraud/waste in
> > Medicare/Medicaid/private insurance, that's also why those claims
> > departments exist. If credit card companies can do such a good job
> > detecting bogus charges, why does the government/private healthcare
> > industry do such a terrible job? Let's not forget that illegal
> > immigration also adds to the higher healthcare costs. You know, I'm so
> > disgusted with our leaders in DC in both parties. We need term limits
> > in Congress so bad. I think nothing will change with DC until then....
> >
> > --- In dmdpioneers@yahoogroups.com
> > <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@> wrote:
> > >The insurance companies have a whole department there just to deny
> > > claims and go through the appeals procedure. If what the doctor
> > request is
> > > honored, then that department isn't needed.
> > >
> > > When everyone is insured, then we don't have millions of dollars
> > being spent
> > > on the un-insured.
> >
> >
>

Not yet, but I really want to. Have you tried it? Right now Apria
doesn't carry it so I'm waiting on them. I contacted both Apria and
Respironics. Hopefully that will help things along. It sounds like a
great little machine. It's only about 4.5" x 7" x 9" and 11 lbs. It also
carries two batteries that just slide in and out. Each battery is
supposed to last 8 hours a piece and I heard the internal battery lasts
over an hour.

Jeff Petrie

Christopher Willmer wrote:
>
> Has anyone tried the Respironics Trilogy 100 vent yet?
>
>

Has anyone tried the Respironics Trilogy 100 vent yet?

Medicaid will cover the care for the complications of DMD (ventilators,
home care, etc.) when private insurance never will. Private insurance
has no interest in us, there's no profit in DMD.

Argument over.



Lee wrote:
>
>
>
> If I'm not mistaken, Medicare/Medicaid denies more claims than private
> insurance. People always mention the fraud/waste in
> Medicare/Medicaid/private insurance, that's also why those claims
> departments exist. If credit card companies can do such a good job
> detecting bogus charges, why does the government/private healthcare
> industry do such a terrible job? Let's not forget that illegal
> immigration also adds to the higher healthcare costs. You know, I'm so
> disgusted with our leaders in DC in both parties. We need term limits
> in Congress so bad. I think nothing will change with DC until then....
>
> --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@...> wrote:
> >The insurance companies have a whole department there just to deny
> > claims and go through the appeals procedure. If what the doctor
> request is
> > honored, then that department isn't needed.
> >
> > When everyone is insured, then we don't have millions of dollars
> being spent
> > on the un-insured.
>
>

If I'm not mistaken, Medicare/Medicaid denies more claims than private
insurance. People always mention the fraud/waste in Medicare/Medicaid/private
insurance, that's also why those claims departments exist. If credit card
companies can do such a good job detecting bogus charges, why does the
government/private healthcare industry do such a terrible job? Let's not forget
that illegal immigration also adds to the higher healthcare costs. You know, I'm
so disgusted with our leaders in DC in both parties. We need term limits in
Congress so bad. I think nothing will change with DC until then....

--- In dmdpioneers@yahoogroups.com, "Adele" <jasona65@...> wrote:
>The insurance companies have a whole department there just to deny
> claims and go through the appeals procedure.  If what the doctor request is
> honored, then that department isn't needed.
>
> When everyone is insured, then we don't have millions of dollars being spent
> on the un-insured.

But it is needed, just like all the other cost saving measures.  Right now,
a doctor can do nothing wrong.  He follows all the established procedures
and still has a bad outcome with his patient.  They sue and win. The doctors
malpractice insurance pays out millions, the insurance co. raise its
premiums and the doctor must raise his fees.

When the insurance company pays out hundreds of thousand of dollars a year
for one person's vent, then multiply that by the # of every one on a vent,
how much does that cost.  And they do this to a lot of different pieces of
DME.  The insurance companies have a whole department there just to deny
claims and go through the appeals procedure.  If what the doctor request is
honored, then that department isn't needed.

When everyone is insured, then we don't have millions of dollars being spent
on the un-insured.

I know, I'm thinking of a perfect word, by hey, I can dream, can't I?


-----Original Message-----
From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Jeff Petrie
Sent: Friday, November 13, 2009 10:29 PM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] New Healthcare Bill

The costs due to malpractice lawsuits are a drop in the bucket. Tort
reform would hardly do anything to bring down costs.

Lee wrote:
>
>
>
> It's gonna take a whole lot more than just tort reform to bring down
> costs. (If it's even possible) The tort reform angle is to bring down
> outrageous malpractice and liability insurance premiums which is
> passed on to medical costs. One has to have nationwide competition
> among health insurance companies with lawsuit reform. Also premiums
> should not be allowed to increase more that the cost of living index
> each year...
>
> --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>, Nick Dupree <nick@...> wrote:
> >
> > no, Texas and California have health costs as high as everywhere else
> > and the highest per capita uninsured population in America.
> >
> > Get a new definition of "it works," because to me, that isn't it.
> >
> > Nick
> >
> >
> >
> > Lee wrote:
> > >
> > >
> > >
> > > Tort reform (cutting down on crazy lawsuits) isn't even being
> > > considered in the healthcare bill or proposal. It has worked in Texas
> > > and California....
> > >
> > > --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@> wrote:
> > > >
> > > > Jonathan I agree with you on most of what you are saying. The
> current
> > > > health care is in a shambles. Both private insurance and
> Medicare and
> > > > Medicaid. I see so much waste in funds. The trouble getting
> proper DME
> > > > based on the individuals needs, not what the insurance thinks
> you needs.
> > > > But I feel that the entire health care business needs to be
> > > revamped. The
> > > > way from what a doctor or hospital charges needs to be
> restructured.
> > > Having
> > > > a doctor charge $635.00 for a new patient office visit only to
> get about
> > > > $100.00 back from the insurance company is silly. (I know why
> it's done)
> > > > Having a doctor write you a prescription for something, only to
> have the
> > > > insurance company demy it.
> > > >
> > > >
> > > >
> > > > There should be no exclusions for a pre-existing condition. Not
> even
> > > a time
> > > > limit. The problem with that is, lets say, you have a heart
> > > condition, your
> > > > insurance will not pay for any care related to that heart
> problem for 6
> > > > months. In that 6 month period, your manageable heart condition get
> > > worse
> > > > because you haven't had the proper care. So now what was controlled
> > > is not.
> > > > The 6 month period is over and now the insurance company has to pay
> > > for more
> > > > expensive treatment.
> > > >
> > > >
> > > >
> > > > It shouldn't cost almost $30,000 for a wheelchair. The reason is
> > > Liability.
> > > > Something goes wrong with a piece of DME. Someone is hurt and
> there is a
> > > > law suit. Companies, hospital and doctors spend too much money for
> > > > liability and malpractice insurance. This is one thing that is
> > > driving up
> > > > the cost.
> > > >
> > > >
> > > >
> > > > Putting more people on the insurance roles is a good thing, but
> > > making the
> > > > insurance they go one better and cut out the waste is even better.
> > > >
> > > >
> > > >
> > > > Adele
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > _____
> > > >
> > > > From: dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>
> > > [mailto:dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>] On
> > > > Behalf Of jhinek@
> > > > Sent: Friday, November 13, 2009 10:00 AM
> > > > To: dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> <mailto:dmdpioneers%40yahoogroups.com>
> > > > Subject: Re: [DMD Pioneers] New Healthcare Bill
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > I would have to summarize that argument as, "if it's broke,
> don't fix
> > > > it, trash it." In other words, throw the baby out with the
> bathwater.
> > > > If it wasn't for Medicaid and Medicare, I don't think most of us
> would
> > > > have made it this far. Well, I guess I should speak for myself, I
> > > > don't know that most people on this list use Medicare or
> Medicaid, but
> > > > many do. I don't see how you can get rid of the pre-existing
> condition
> > > > limitation, and control prices, purely through the free market. The
> > > > free market works great for luxury items, but in my opinion I'd
> rather
> > > > not bet my life on it.
> > > >
> > > > Jonathan
> > > >
> > > > On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> > > > <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > > > > <...b/c Medicare and Medicaid, in most states, are broken.>
> > > > >
> > > > > Right, and the bill requires states to pay even more in Medicaid.
> > > Not to
> > > > mention $500 billion in Medicare cuts. If Medicare are Medicaid are
> > > broke,
> > > > why on earth would we even consider a whole new government run
> > > entitlement
> > > > heath care program? It's a recipe for disaster, I tell ya.... :-)
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > ------------------------------------
> > > > >
> > > > > ----------
> > > > > Pioneer Profiles - Create your profile for DMD Pioneers:
> > > > > http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo
> <http://tinyurl.com/pioneerprofilesYahoo>
> > > <http://tinyurl.com/pioneerprofilesYahoo
> <http://tinyurl.com/pioneerprofilesYahoo>>>
> > > > com/pioneerprofilesYahoo! Groups Links
> > > > >
> > > > >
> > > > >
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > >
> >
>
>



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

----------
Pioneer Profiles - Create your profile for DMD Pioneers:
http://tinyurl.com/pioneerprofilesYahoo! Groups Links

I know.  In my mind, with getting to the root of why health care costs so
much, this "plan" will not work in the long run



Adele



   _____

From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Lee
Sent: Friday, November 13, 2009 3:31 PM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] New Healthcare Bill







Tort reform (cutting down on crazy lawsuits) isn't even being considered in
the healthcare bill or proposal. It has worked in Texas and California....

--- In dmdpioneers@ <mailto:dmdpioneers%40yahoogroups.com> yahoogroups.com,
"Adele" <jasona65@...> wrote:
>
> Jonathan I agree with you on most of what you are saying. The current
> health care is in a shambles. Both private insurance and Medicare and
> Medicaid. I see so much waste in funds. The trouble getting proper DME
> based on the individuals needs, not what the insurance thinks you needs.
> But I feel that the entire health care business needs to be revamped. The
> way from what a doctor or hospital charges needs to be restructured.
Having
> a doctor charge $635.00 for a new patient office visit only to get about
> $100.00 back from the insurance company is silly. (I know why it's done)
> Having a doctor write you a prescription for something, only to have the
> insurance company demy it.
>
>
>
> There should be no exclusions for a pre-existing condition. Not even a
time
> limit. The problem with that is, lets say, you have a heart condition,
your
> insurance will not pay for any care related to that heart problem for 6
> months. In that 6 month period, your manageable heart condition get worse
> because you haven't had the proper care. So now what was controlled is
not.
> The 6 month period is over and now the insurance company has to pay for
more
> expensive treatment.
>
>
>
> It shouldn't cost almost $30,000 for a wheelchair. The reason is
Liability.
> Something goes wrong with a piece of DME. Someone is hurt and there is a
> law suit. Companies, hospital and doctors spend too much money for
> liability and malpractice insurance. This is one thing that is driving up
> the cost.
>
>
>
> Putting more people on the insurance roles is a good thing, but making the
> insurance they go one better and cut out the waste is even better.
>
>
>
> Adele
>
>
>
>
>
>
>
> _____
>
> From: dmdpioneers@ <mailto:dmdpioneers%40yahoogroups.com> yahoogroups.com
[mailto:dmdpioneers@ <mailto:dmdpioneers%40yahoogroups.com> yahoogroups.com]
On
> Behalf Of jhinek@...
> Sent: Friday, November 13, 2009 10:00 AM
> To: dmdpioneers@ <mailto:dmdpioneers%40yahoogroups.com> yahoogroups.com
> Subject: Re: [DMD Pioneers] New Healthcare Bill
>
>
>
>
>
> I would have to summarize that argument as, "if it's broke, don't fix
> it, trash it." In other words, throw the baby out with the bathwater.
> If it wasn't for Medicaid and Medicare, I don't think most of us would
> have made it this far. Well, I guess I should speak for myself, I
> don't know that most people on this list use Medicare or Medicaid, but
> many do. I don't see how you can get rid of the pre-existing condition
> limitation, and control prices, purely through the free market. The
> free market works great for luxury items, but in my opinion I'd rather
> not bet my life on it.
>
> Jonathan
>
> On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > <...b/c Medicare and Medicaid, in most states, are broken.>
> >
> > Right, and the bill requires states to pay even more in Medicaid. Not to
> mention $500 billion in Medicare cuts. If Medicare are Medicaid are broke,
> why on earth would we even consider a whole new government run entitlement
> heath care program? It's a recipe for disaster, I tell ya.... :-)
> >
> >
> >
> >
> > ------------------------------------
> >
> > ----------
> > Pioneer Profiles - Create your profile for DMD Pioneers:
> > http://tinyurl. <http://tinyurl.
<http://tinyurl.com/pioneerprofilesYahoo> com/pioneerprofilesYahoo>
> com/pioneerprofilesYahoo! Groups Links
> >
> >
> >
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>





[Non-text portions of this message have been removed]

The costs due to malpractice lawsuits are a drop in the bucket. Tort
reform would hardly do anything to bring down costs.

Lee wrote:
>
>
>
> It's gonna take a whole lot more than just tort reform to bring down
> costs. (If it's even possible) The tort reform angle is to bring down
> outrageous malpractice and liability insurance premiums which is
> passed on to medical costs. One has to have nationwide competition
> among health insurance companies with lawsuit reform. Also premiums
> should not be allowed to increase more that the cost of living index
> each year...
>
> --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>, Nick Dupree <nick@...> wrote:
> >
> > no, Texas and California have health costs as high as everywhere else
> > and the highest per capita uninsured population in America.
> >
> > Get a new definition of "it works," because to me, that isn't it.
> >
> > Nick
> >
> >
> >
> > Lee wrote:
> > >
> > >
> > >
> > > Tort reform (cutting down on crazy lawsuits) isn't even being
> > > considered in the healthcare bill or proposal. It has worked in Texas
> > > and California....
> > >
> > > --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@> wrote:
> > > >
> > > > Jonathan I agree with you on most of what you are saying. The
> current
> > > > health care is in a shambles. Both private insurance and
> Medicare and
> > > > Medicaid. I see so much waste in funds. The trouble getting
> proper DME
> > > > based on the individuals needs, not what the insurance thinks
> you needs.
> > > > But I feel that the entire health care business needs to be
> > > revamped. The
> > > > way from what a doctor or hospital charges needs to be
> restructured.
> > > Having
> > > > a doctor charge $635.00 for a new patient office visit only to
> get about
> > > > $100.00 back from the insurance company is silly. (I know why
> it's done)
> > > > Having a doctor write you a prescription for something, only to
> have the
> > > > insurance company demy it.
> > > >
> > > >
> > > >
> > > > There should be no exclusions for a pre-existing condition. Not
> even
> > > a time
> > > > limit. The problem with that is, lets say, you have a heart
> > > condition, your
> > > > insurance will not pay for any care related to that heart
> problem for 6
> > > > months. In that 6 month period, your manageable heart condition get
> > > worse
> > > > because you haven't had the proper care. So now what was controlled
> > > is not.
> > > > The 6 month period is over and now the insurance company has to pay
> > > for more
> > > > expensive treatment.
> > > >
> > > >
> > > >
> > > > It shouldn't cost almost $30,000 for a wheelchair. The reason is
> > > Liability.
> > > > Something goes wrong with a piece of DME. Someone is hurt and
> there is a
> > > > law suit. Companies, hospital and doctors spend too much money for
> > > > liability and malpractice insurance. This is one thing that is
> > > driving up
> > > > the cost.
> > > >
> > > >
> > > >
> > > > Putting more people on the insurance roles is a good thing, but
> > > making the
> > > > insurance they go one better and cut out the waste is even better.
> > > >
> > > >
> > > >
> > > > Adele
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > _____
> > > >
> > > > From: dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>
> > > [mailto:dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> > > <mailto:dmdpioneers%40yahoogroups.com>] On
> > > > Behalf Of jhinek@
> > > > Sent: Friday, November 13, 2009 10:00 AM
> > > > To: dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> <mailto:dmdpioneers%40yahoogroups.com>
> > > > Subject: Re: [DMD Pioneers] New Healthcare Bill
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > I would have to summarize that argument as, "if it's broke,
> don't fix
> > > > it, trash it." In other words, throw the baby out with the
> bathwater.
> > > > If it wasn't for Medicaid and Medicare, I don't think most of us
> would
> > > > have made it this far. Well, I guess I should speak for myself, I
> > > > don't know that most people on this list use Medicare or
> Medicaid, but
> > > > many do. I don't see how you can get rid of the pre-existing
> condition
> > > > limitation, and control prices, purely through the free market. The
> > > > free market works great for luxury items, but in my opinion I'd
> rather
> > > > not bet my life on it.
> > > >
> > > > Jonathan
> > > >
> > > > On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> > > > <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > > > > <...b/c Medicare and Medicaid, in most states, are broken.>
> > > > >
> > > > > Right, and the bill requires states to pay even more in Medicaid.
> > > Not to
> > > > mention $500 billion in Medicare cuts. If Medicare are Medicaid are
> > > broke,
> > > > why on earth would we even consider a whole new government run
> > > entitlement
> > > > heath care program? It's a recipe for disaster, I tell ya.... :-)
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > ------------------------------------
> > > > >
> > > > > ----------
> > > > > Pioneer Profiles - Create your profile for DMD Pioneers:
> > > > > http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo
> <http://tinyurl.com/pioneerprofilesYahoo>
> > > <http://tinyurl.com/pioneerprofilesYahoo
> <http://tinyurl.com/pioneerprofilesYahoo>>>
> > > > com/pioneerprofilesYahoo! Groups Links
> > > > >
> > > > >
> > > > >
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > >
> >
>
>

It's gonna take a whole lot more than just tort reform to bring down costs. (If
it's even possible) The tort reform angle is to bring down outrageous
malpractice and liability insurance premiums which is passed on to medical
costs. One has to have nationwide competition among health insurance companies
with lawsuit reform. Also premiums should not be allowed to increase more that
the cost of living index each year...

--- In dmdpioneers@yahoogroups.com, Nick Dupree <nick@...> wrote:
>
> no, Texas and California have health costs as high as everywhere else
> and the highest per capita uninsured population in America.
>
> Get a new definition of "it works," because to me, that isn't it.
>
> Nick
>
>
>
> Lee wrote:
> >
> >
> >
> > Tort reform (cutting down on crazy lawsuits) isn't even being
> > considered in the healthcare bill or proposal. It has worked in Texas
> > and California....
> >
> > --- In dmdpioneers@yahoogroups.com
> > <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@> wrote:
> > >
> > > Jonathan I agree with you on most of what you are saying. The current
> > > health care is in a shambles. Both private insurance and Medicare and
> > > Medicaid. I see so much waste in funds. The trouble getting proper DME
> > > based on the individuals needs, not what the insurance thinks you needs.
> > > But I feel that the entire health care business needs to be
> > revamped. The
> > > way from what a doctor or hospital charges needs to be restructured.
> > Having
> > > a doctor charge $635.00 for a new patient office visit only to get about
> > > $100.00 back from the insurance company is silly. (I know why it's done)
> > > Having a doctor write you a prescription for something, only to have the
> > > insurance company demy it.
> > >
> > >
> > >
> > > There should be no exclusions for a pre-existing condition. Not even
> > a time
> > > limit. The problem with that is, lets say, you have a heart
> > condition, your
> > > insurance will not pay for any care related to that heart problem for 6
> > > months. In that 6 month period, your manageable heart condition get
> > worse
> > > because you haven't had the proper care. So now what was controlled
> > is not.
> > > The 6 month period is over and now the insurance company has to pay
> > for more
> > > expensive treatment.
> > >
> > >
> > >
> > > It shouldn't cost almost $30,000 for a wheelchair. The reason is
> > Liability.
> > > Something goes wrong with a piece of DME. Someone is hurt and there is a
> > > law suit. Companies, hospital and doctors spend too much money for
> > > liability and malpractice insurance. This is one thing that is
> > driving up
> > > the cost.
> > >
> > >
> > >
> > > Putting more people on the insurance roles is a good thing, but
> > making the
> > > insurance they go one better and cut out the waste is even better.
> > >
> > >
> > >
> > > Adele
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > _____
> > >
> > > From: dmdpioneers@yahoogroups.com
> > <mailto:dmdpioneers%40yahoogroups.com>
> > [mailto:dmdpioneers@yahoogroups.com
> > <mailto:dmdpioneers%40yahoogroups.com>] On
> > > Behalf Of jhinek@
> > > Sent: Friday, November 13, 2009 10:00 AM
> > > To: dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com>
> > > Subject: Re: [DMD Pioneers] New Healthcare Bill
> > >
> > >
> > >
> > >
> > >
> > > I would have to summarize that argument as, "if it's broke, don't fix
> > > it, trash it." In other words, throw the baby out with the bathwater.
> > > If it wasn't for Medicaid and Medicare, I don't think most of us would
> > > have made it this far. Well, I guess I should speak for myself, I
> > > don't know that most people on this list use Medicare or Medicaid, but
> > > many do. I don't see how you can get rid of the pre-existing condition
> > > limitation, and control prices, purely through the free market. The
> > > free market works great for luxury items, but in my opinion I'd rather
> > > not bet my life on it.
> > >
> > > Jonathan
> > >
> > > On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> > > <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > > > <...b/c Medicare and Medicaid, in most states, are broken.>
> > > >
> > > > Right, and the bill requires states to pay even more in Medicaid.
> > Not to
> > > mention $500 billion in Medicare cuts. If Medicare are Medicaid are
> > broke,
> > > why on earth would we even consider a whole new government run
> > entitlement
> > > heath care program? It's a recipe for disaster, I tell ya.... :-)
> > > >
> > > >
> > > >
> > > >
> > > > ------------------------------------
> > > >
> > > > ----------
> > > > Pioneer Profiles - Create your profile for DMD Pioneers:
> > > > http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo
> > <http://tinyurl.com/pioneerprofilesYahoo>>
> > > com/pioneerprofilesYahoo! Groups Links
> > > >
> > > >
> > > >
> > > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
>

hi..all

very interesting..bt wud lik to knw ..is such a treatment save..or it may hav
side-effects dat may actuAlly worsen tings...so still many questions
unanswered..
can anyone here tell me more on tis findings..wud gladly appreciate..
thanx,
ANUJ




________________________________
From: "jhinek@..." <jhinek@...>
To: dmdpioneers@yahoogroups.com
Sent: Fri, November 13, 2009 9:29:18 AM
Subject: Re: [DMD Pioneers] "MD Breakthrough" Dr Riordan - update


Very interesting. At the least, it sounds like the doctor is sincere.
The fact that he has so far  done this work for free  is a good sign.
But I also share Pat Furlong's skepticism. It seems very strange that
he's been able to implement a successful stem cell treatment without
any need for immunosuppression.   I'd like to know how he found a way
around that, because it has been one of the major roadblocks for other
researchers.

Has anyone else been following this?

Jonathan

2009/11/12 Estevão Augusto <esaugusto@gmail. com>:
> "MD Breakthrough" Dr Riordan - update
>
>    * Posted by Pat Furlong on November 12, 2009 at 7:09am
>
> I spoke with Dr. Riordan yesterday. I found him very open and willing
> to discuss his work.
>
> To date he has performed the cell transplant procedure on three young
> adults with Duchenne. Ryan is 23. Another young man was 28. The
> procedure was considiered Compassionate use.
>
> Dr. Riordan is using MSCs (human mesenchymal stem cells). The origin
> of these cells is from bone marrow donors, age 18-65 and/or umbilical
> cord cells. Dr. Riordan said there is greater potency of cells from
> young donors (18+) and /or cord cells. The cells are grown in culture
> and prepared for transplant. Adult derived cells are capable of 20/30
> doublings. Umbilical cord derived -200 doublings. He suggested that
> there is significant data to suggest MSCs integrate well and become
> muscle cells. But what if the environment has more fat/fiber than
> muscle? What evidence do we have the the MSCs will become muscle? Is
> it possible, the MSCs could actually make things worse? These are my
> questions and will be discussed in the near future.
>
> Dr. Riordan said none of the young men are on an immune suppression
> protocol, that they have had no problems with rejection.
>
> Ryan's biopsy was peformed in his home state, Dystrophin testing was
> done by Athena. Dr. Riordan thought the biopsy was done on the
> Quadriceps muscle, but would need to check.
>
> Strength testing pre and post was done by physical therapists at the
> Stem Cell facility. Dr. Riordan did not have methods of testing, nor
> the pre and post testing available for the call.
> .
> Dr. Riordan is not accepting patients at this time. The procedure is
> quite expensive, in the neighborhood of $100,000 and the three young
> men who received stem cells were done at no charge. Dr. Riordan is
> interested in developing collaborations and clinical trials with
> academic centers.
>
> Dr. Riordan is kind and genuinely interested in understanding the
> potential of MSCs in DMD, but significant questions remain before we
> would be able to jump on this bandwagon. Dr. Riordan was leaving Costa
> Rica today and will be traveling for a few days. We agreed, I would
> connect with Lee Sweeney and Gillian Butler Browne to schedule a
> conference call.
>
> More on this in the next days/weeks.
>
>
> Pat
>
> --
> Estevão Augusto
> http://filmescopio. blogspot. com/
> http://livro- esoterico. blogspot. com/
> http://distrofico. blogspot. com/
>
>
> ------------ --------- --------- ------
>
> ----------
> Pioneer Profiles - Create your profile for DMD Pioneers:
> http://tinyurl. com/pioneerprofi lesYahoo! Groups Links
>
>
>
>






[Non-text portions of this message have been removed]

no, Texas and California have health costs as high as everywhere else
and the highest per capita uninsured population in America.

Get a new definition of "it works," because to me, that isn't it.

Nick



Lee wrote:
>
>
>
> Tort reform (cutting down on crazy lawsuits) isn't even being
> considered in the healthcare bill or proposal. It has worked in Texas
> and California....
>
> --- In dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>, "Adele" <jasona65@...> wrote:
> >
> > Jonathan I agree with you on most of what you are saying. The current
> > health care is in a shambles. Both private insurance and Medicare and
> > Medicaid. I see so much waste in funds. The trouble getting proper DME
> > based on the individuals needs, not what the insurance thinks you needs.
> > But I feel that the entire health care business needs to be
> revamped. The
> > way from what a doctor or hospital charges needs to be restructured.
> Having
> > a doctor charge $635.00 for a new patient office visit only to get about
> > $100.00 back from the insurance company is silly. (I know why it's done)
> > Having a doctor write you a prescription for something, only to have the
> > insurance company demy it.
> >
> >
> >
> > There should be no exclusions for a pre-existing condition. Not even
> a time
> > limit. The problem with that is, lets say, you have a heart
> condition, your
> > insurance will not pay for any care related to that heart problem for 6
> > months. In that 6 month period, your manageable heart condition get
> worse
> > because you haven't had the proper care. So now what was controlled
> is not.
> > The 6 month period is over and now the insurance company has to pay
> for more
> > expensive treatment.
> >
> >
> >
> > It shouldn't cost almost $30,000 for a wheelchair. The reason is
> Liability.
> > Something goes wrong with a piece of DME. Someone is hurt and there is a
> > law suit. Companies, hospital and doctors spend too much money for
> > liability and malpractice insurance. This is one thing that is
> driving up
> > the cost.
> >
> >
> >
> > Putting more people on the insurance roles is a good thing, but
> making the
> > insurance they go one better and cut out the waste is even better.
> >
> >
> >
> > Adele
> >
> >
> >
> >
> >
> >
> >
> > _____
> >
> > From: dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>
> [mailto:dmdpioneers@yahoogroups.com
> <mailto:dmdpioneers%40yahoogroups.com>] On
> > Behalf Of jhinek@...
> > Sent: Friday, November 13, 2009 10:00 AM
> > To: dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com>
> > Subject: Re: [DMD Pioneers] New Healthcare Bill
> >
> >
> >
> >
> >
> > I would have to summarize that argument as, "if it's broke, don't fix
> > it, trash it." In other words, throw the baby out with the bathwater.
> > If it wasn't for Medicaid and Medicare, I don't think most of us would
> > have made it this far. Well, I guess I should speak for myself, I
> > don't know that most people on this list use Medicare or Medicaid, but
> > many do. I don't see how you can get rid of the pre-existing condition
> > limitation, and control prices, purely through the free market. The
> > free market works great for luxury items, but in my opinion I'd rather
> > not bet my life on it.
> >
> > Jonathan
> >
> > On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> > <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > > <...b/c Medicare and Medicaid, in most states, are broken.>
> > >
> > > Right, and the bill requires states to pay even more in Medicaid.
> Not to
> > mention $500 billion in Medicare cuts. If Medicare are Medicaid are
> broke,
> > why on earth would we even consider a whole new government run
> entitlement
> > heath care program? It's a recipe for disaster, I tell ya.... :-)
> > >
> > >
> > >
> > >
> > > ------------------------------------
> > >
> > > ----------
> > > Pioneer Profiles - Create your profile for DMD Pioneers:
> > > http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo
> <http://tinyurl.com/pioneerprofilesYahoo>>
> > com/pioneerprofilesYahoo! Groups Links
> > >
> > >
> > >
> > >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>

Tort reform (cutting down on crazy lawsuits) isn't even being considered in the
healthcare bill or proposal. It has worked in Texas and California....

--- In dmdpioneers@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Jonathan  I agree with you on most of what you are saying.  The current
> health care is in a shambles.  Both private insurance and Medicare and
> Medicaid.  I see so much waste in funds.  The trouble getting proper DME
> based on the individuals needs, not what the insurance thinks you needs.
> But I feel that the entire health care business needs to be revamped.  The
> way from what a doctor or hospital charges needs to be restructured.  Having
> a doctor charge $635.00 for a new patient office visit only to get about
> $100.00 back from the insurance company is silly.  (I know why it's done)
> Having a doctor write you a prescription for something, only to have the
> insurance company demy it.
>
>
>
> There should be no exclusions for a pre-existing condition.  Not even a time
> limit.  The problem with that is, lets say, you have a heart condition, your
> insurance will not pay for any care related to that heart problem for 6
> months.  In that 6 month period, your manageable heart condition get worse
> because you haven't had the proper care. So now what was controlled is not.
> The 6 month period is over and now the insurance company has to pay for more
> expensive treatment.
>
>
>
> It shouldn't cost almost $30,000 for a wheelchair.  The reason is Liability.
> Something goes wrong with a piece of DME.  Someone is hurt and there is a
> law suit.  Companies, hospital and doctors spend too much money for
> liability and malpractice insurance.  This is one thing that is driving up
> the cost.
>
>
>
> Putting more people on the insurance roles is a good thing, but making the
> insurance they go one better and cut out the waste is even better.
>
>
>
> Adele
>
>
>
>
>
>
>
>   _____
>
> From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
> Behalf Of jhinek@...
> Sent: Friday, November 13, 2009 10:00 AM
> To: dmdpioneers@yahoogroups.com
> Subject: Re: [DMD Pioneers] New Healthcare Bill
>
>
>
>
>
> I would have to summarize that argument as, "if it's broke, don't fix
> it, trash it." In other words, throw the baby out with the bathwater.
> If it wasn't for Medicaid and Medicare, I don't think most of us would
> have made it this far. Well, I guess I should speak for myself, I
> don't know that most people on this list use Medicare or Medicaid, but
> many do. I don't see how you can get rid of the pre-existing condition
> limitation, and control prices, purely through the free market. The
> free market works great for luxury items, but in my opinion I'd rather
> not bet my life on it.
>
> Jonathan
>
> On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
> <mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> > <...b/c Medicare and Medicaid, in most states, are broken.>
> >
> > Right, and the bill requires states to pay even more in Medicaid. Not to
> mention $500 billion in Medicare cuts. If Medicare are Medicaid are broke,
> why on earth would we even consider a whole new government run entitlement
> heath care program? It's a recipe for disaster, I tell ya.... :-)
> >
> >
> >
> >
> > ------------------------------------
> >
> > ----------
> > Pioneer Profiles - Create your profile for DMD Pioneers:
> > http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo>
> com/pioneerprofilesYahoo! Groups Links
> >
> >
> >
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

No, I wouldn't bet my life on the free market or the government. Both have to be
monitored to do the right things. The idea that the government can add 30
million some odd people to the healthcare system and save money is a complete
Washington D.C. fantasy. They already (the Senate proposal) had to doctor (fake)
the budget numbers by collecting money years before the bill would come into
effect (which kicks the red ink down the road until after 10 years when the true
price comes due) to meet Obama's pipe dream "promise" of not adding one dime to
the deficit. (Oh and I have this really big bridge in NYC) I only have Medicaid,
too. I continue to say that common sense is dead...

--- In dmdpioneers@yahoogroups.com, jhinek@... wrote:
>
>  I would have to summarize that argument as, "if it's broke, don't fix
> it, trash it." In other words,  throw the baby out with the bathwater.
> If it wasn't for Medicaid and Medicare, I don't think most of us would
> have made it this far. Well, I guess I should speak for myself, I
> don't know that most people on this list use Medicare or Medicaid, but
> many do. I don't see how you can get rid of the pre-existing condition
> limitation, and control prices, purely through the free market. The
> free market works great for luxury items, but in my opinion I'd rather
> not bet my life on it.
>
> Jonathan
>
> On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@...> wrote:
> > <...b/c Medicare and Medicaid, in most states, are broken.>
> >
> > Right, and the bill requires states to pay even more in Medicaid. Not to
mention $500 billion in Medicare cuts. If Medicare are Medicaid are broke, why
on earth would we even consider a whole new government run entitlement heath
care program? It's a recipe for disaster, I tell ya.... :-)
> >
> >
> >
> >
> > ------------------------------------
> >
> > ----------
> > Pioneer Profiles - Create your profile for DMD Pioneers:
> > http://tinyurl.com/pioneerprofilesYahoo! Groups Links
> >
> >
> >
> >
>

Jonathan  I agree with you on most of what you are saying.  The current
health care is in a shambles.  Both private insurance and Medicare and
Medicaid.  I see so much waste in funds.  The trouble getting proper DME
based on the individuals needs, not what the insurance thinks you needs.
But I feel that the entire health care business needs to be revamped.  The
way from what a doctor or hospital charges needs to be restructured.  Having
a doctor charge $635.00 for a new patient office visit only to get about
$100.00 back from the insurance company is silly.  (I know why it's done)
Having a doctor write you a prescription for something, only to have the
insurance company demy it.



There should be no exclusions for a pre-existing condition.  Not even a time
limit.  The problem with that is, lets say, you have a heart condition, your
insurance will not pay for any care related to that heart problem for 6
months.  In that 6 month period, your manageable heart condition get worse
because you haven't had the proper care. So now what was controlled is not.
The 6 month period is over and now the insurance company has to pay for more
expensive treatment.



It shouldn't cost almost $30,000 for a wheelchair.  The reason is Liability.
Something goes wrong with a piece of DME.  Someone is hurt and there is a
law suit.  Companies, hospital and doctors spend too much money for
liability and malpractice insurance.  This is one thing that is driving up
the cost.



Putting more people on the insurance roles is a good thing, but making the
insurance they go one better and cut out the waste is even better.



Adele







   _____

From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of jhinek@...
Sent: Friday, November 13, 2009 10:00 AM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] New Healthcare Bill





I would have to summarize that argument as, "if it's broke, don't fix
it, trash it." In other words, throw the baby out with the bathwater.
If it wasn't for Medicaid and Medicare, I don't think most of us would
have made it this far. Well, I guess I should speak for myself, I
don't know that most people on this list use Medicare or Medicaid, but
many do. I don't see how you can get rid of the pre-existing condition
limitation, and control prices, purely through the free market. The
free market works great for luxury items, but in my opinion I'd rather
not bet my life on it.

Jonathan

On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@
<mailto:capttrekker%40yahoo.com> yahoo.com> wrote:
> <...b/c Medicare and Medicaid, in most states, are broken.>
>
> Right, and the bill requires states to pay even more in Medicaid. Not to
mention $500 billion in Medicare cuts. If Medicare are Medicaid are broke,
why on earth would we even consider a whole new government run entitlement
heath care program? It's a recipe for disaster, I tell ya.... :-)
>
>
>
>
> ------------------------------------
>
> ----------
> Pioneer Profiles - Create your profile for DMD Pioneers:
> http://tinyurl. <http://tinyurl.com/pioneerprofilesYahoo>
com/pioneerprofilesYahoo! Groups Links
>
>
>
>





[Non-text portions of this message have been removed]

I would have to summarize that argument as, "if it's broke, don't fix
it, trash it." In other words,  throw the baby out with the bathwater.
If it wasn't for Medicaid and Medicare, I don't think most of us would
have made it this far. Well, I guess I should speak for myself, I
don't know that most people on this list use Medicare or Medicaid, but
many do. I don't see how you can get rid of the pre-existing condition
limitation, and control prices, purely through the free market. The
free market works great for luxury items, but in my opinion I'd rather
not bet my life on it.

Jonathan

On Wed, Nov 11, 2009 at 3:56 PM, Lee <capttrekker@...> wrote:
> <...b/c Medicare and Medicaid, in most states, are broken.>
>
> Right, and the bill requires states to pay even more in Medicaid. Not to
mention $500 billion in Medicare cuts. If Medicare are Medicaid are broke, why
on earth would we even consider a whole new government run entitlement heath
care program? It's a recipe for disaster, I tell ya.... :-)
>
>
>
>
> ------------------------------------
>
> ----------
> Pioneer Profiles - Create your profile for DMD Pioneers:
> http://tinyurl.com/pioneerprofilesYahoo! Groups Links
>
>
>
>

Very interesting. At the least, it sounds like the doctor is sincere.
The fact that he has so far  done this work for free  is a good sign.
But I also share Pat Furlong's skepticism. It seems very strange that
he's been able to implement a successful stem cell treatment without
any need for immunosuppression.   I'd like to know how he found a way
around that, because it has been one of the major roadblocks for other
researchers.

Has anyone else been following this?

Jonathan



2009/11/12 Estevão Augusto <esaugusto@...>:
> "MD Breakthrough" Dr Riordan - update
>
>    * Posted by Pat Furlong on November 12, 2009 at 7:09am
>
> I spoke with Dr. Riordan yesterday. I found him very open and willing
> to discuss his work.
>
> To date he has performed the cell transplant procedure on three young
> adults with Duchenne. Ryan is 23. Another young man was 28. The
> procedure was considiered Compassionate use.
>
> Dr. Riordan is using MSCs (human mesenchymal stem cells). The origin
> of these cells is from bone marrow donors, age 18-65 and/or umbilical
> cord cells. Dr. Riordan said there is greater potency of cells from
> young donors (18+) and /or cord cells. The cells are grown in culture
> and prepared for transplant. Adult derived cells are capable of 20/30
> doublings. Umbilical cord derived -200 doublings. He suggested that
> there is significant data to suggest MSCs integrate well and become
> muscle cells. But what if the environment has more fat/fiber than
> muscle? What evidence do we have the the MSCs will become muscle? Is
> it possible, the MSCs could actually make things worse? These are my
> questions and will be discussed in the near future.
>
> Dr. Riordan said none of the young men are on an immune suppression
> protocol, that they have had no problems with rejection.
>
> Ryan's biopsy was peformed in his home state, Dystrophin testing was
> done by Athena. Dr. Riordan thought the biopsy was done on the
> Quadriceps muscle, but would need to check.
>
> Strength testing pre and post was done by physical therapists at the
> Stem Cell facility. Dr. Riordan did not have methods of testing, nor
> the pre and post testing available for the call.
> .
> Dr. Riordan is not accepting patients at this time. The procedure is
> quite expensive, in the neighborhood of $100,000 and the three young
> men who received stem cells were done at no charge. Dr. Riordan is
> interested in developing collaborations and clinical trials with
> academic centers.
>
> Dr. Riordan is kind and genuinely interested in understanding the
> potential of MSCs in DMD, but significant questions remain before we
> would be able to jump on this bandwagon. Dr. Riordan was leaving Costa
> Rica today and will be traveling for a few days. We agreed, I would
> connect with Lee Sweeney and Gillian Butler Browne to schedule a
> conference call.
>
> More on this in the next days/weeks.
>
>
> Pat
>
> --
> Estevão Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>
>
> ------------------------------------
>
> ----------
> Pioneer Profiles - Create your profile for DMD Pioneers:
> http://tinyurl.com/pioneerprofilesYahoo! Groups Links
>
>
>
>

I'm sorry, I haven't been checking groups as much lately, lots of
other stuff going on here, and I just recently got out of the hospital
with what they think is a gastric ulcer (although they weren't able to
positively confirm it). Anyway, if you haven't purchased your Mac
already, I'd say go for something with a lot of RAM and at least
decent processor speed. The RAM is good for running multiple programs,
and may come in handy if you need to run a separate operating system
in parallel, to get access to software that isn't yet available for
the Mac.

To answer your question, my processor is 3.06 GHz Intel core 2 duo,
with 4 GB 1067 MHz DDR3 memory.

Jonathan



On Mon, Oct 19, 2009 at 11:01 PM, dwighteldredjr
<dwighteldredjr@...> wrote:
> I was wondering what speed processor your Mac has Jonathan.  Now I have to
decide how fast of a processor I need.  I was thinking of getting the fastest
processor I can but if I can get by with a slightly slower processor and still
get relatively good performance I would be wise to save the extra money.
>
> Dwight
>
> --- In dmdpioneers@yahoogroups.com, jhinek@... wrote:
>>
>> Hi, Dwight. I'm just now noticing this thread. Have you made the
>> transition already? I moved to a Mac earlier this year, during the
>> summer I think. I'm using MacSpeech Dictate, and it works pretty well
>> all things considered. I've heard that it's not as good as Dragon
>> Naturally Speaking, so if you've been using the latest versions of
>> that software, you probably will be somewhat disappointed. However, if
>> you're upgrading from an older voice recognition program, you may
>> actually see some improvements. It works fine for my needs. Of course,
>> if you want, there's always the option of running a parallel version
>> of Windows and Dragon on the Mac. The thing I like about my new iMac
>> is that it is incredibly stable. I never have any problems with
>> security or freezing or needing to reboot.
>>
>> Jonathan
>>
>>
>>
>> On Fri, Sep 25, 2009 at 7:50 PM, dwighteldredjr
>> <dwighteldredjr@...> wrote:
>> >
>> > Thanks for the information Rob.  Looking forward to the transition.  Tired
of Windows.
>> >
>> >  --- In dmdpioneers@yahoogroups.com, Rendell Hooper Mail <rendellhooper@>
wrote:
>> >>
>> >> >  Hi Dwight
>> >> > My son uses a Mac and uses MacSpeech dictate ­ which is a much better
version
>> >> > than the Dragon dictate he used to use on windows 98. It appears to be a
>> >> > better version than the windows version.
>> >> > cheers Rob Australia
>> >> >
>> >> >
>> >> >
>> >> > I am going to be buying a laptop soon and am leaning heavily towards a
Mac.  I
>> >> > was wondering if anyone uses a Mac and if so do they use MacSpeech
Dictate?
>> >> > Even if you do not use this software have you heard anything good or bad
about
>> >> > it?
>> >> >
>> >> > Dwight
>> >> >
>> >> >
>> >> >
>> >> >
>> >> >
>> >>
>> >>
>> >>
>> >>
>> >> [Non-text portions of this message have been removed]
>> >>
>> >
>> >
>> >
>> >
>> > ------------------------------------
>> >
>> > ----------
>> > DMD Pioneers Mailing List Chat: Sundays @ 3 PM Eastern (12 Pacific)Yahoo!
Groups Links
>> >
>> >
>> >
>> >
>>
>
>
>
>
> ------------------------------------
>
> ----------
> Pioneer Profiles - Create your profile for DMD Pioneers:
> http://tinyurl.com/pioneerprofilesYahoo! Groups Links
>
>
>
>

_____

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Estevão Augusto
Sent: Thursday, November 12, 2009 10:41 AM
To: distrofia_muscular; dmdsupport@yahoogroups.com;
dmdpioneers@yahoogroups.com; md-list@yahoogroups.com
Subject: [MD-List] "MD Breakthrough" Dr Riordan - update





"MD Breakthrough" Dr Riordan - update

* Posted by Pat Furlong on November 12, 2009 at 7:09am

I spoke with Dr. Riordan yesterday. I found him very open and willing
to discuss his work.

To date he has performed the cell transplant procedure on three young
adults with Duchenne. Ryan is 23. Another young man was 28. The
procedure was considiered Compassionate use.

Dr. Riordan is using MSCs (human mesenchymal stem cells). The origin
of these cells is from bone marrow donors, age 18-65 and/or umbilical
cord cells. Dr. Riordan said there is greater potency of cells from
young donors (18+) and /or cord cells. The cells are grown in culture
and prepared for transplant. Adult derived cells are capable of 20/30
doublings. Umbilical cord derived -200 doublings. He suggested that
there is significant data to suggest MSCs integrate well and become
muscle cells. But what if the environment has more fat/fiber than
muscle? What evidence do we have the the MSCs will become muscle? Is
it possible, the MSCs could actually make things worse? These are my
questions and will be discussed in the near future.

Dr. Riordan said none of the young men are on an immune suppression
protocol, that they have had no problems with rejection.

Ryan's biopsy was peformed in his home state, Dystrophin testing was
done by Athena. Dr. Riordan thought the biopsy was done on the
Quadriceps muscle, but would need to check.

Strength testing pre and post was done by physical therapists at the
Stem Cell facility. Dr. Riordan did not have methods of testing, nor
the pre and post testing available for the call.
.
Dr. Riordan is not accepting patients at this time. The procedure is
quite expensive, in the neighborhood of $100,000 and the three young
men who received stem cells were done at no charge. Dr. Riordan is
interested in developing collaborations and clinical trials with
academic centers.

Dr. Riordan is kind and genuinely interested in understanding the
potential of MSCs in DMD, but significant questions remain before we
would be able to jump on this bandwagon. Dr. Riordan was leaving Costa
Rica today and will be traveling for a few days. We agreed, I would
connect with Lee Sweeney and Gillian Butler Browne to schedule a
conference call.

More on this in the next days/weeks.

Pat

--
Estevão Augusto
http://filmescopio. <http://filmescopio.blogspot.com/> blogspot.com/
http://livro- <http://livro-esoterico.blogspot.com/> esoterico.blogspot.com/
http://distrofico. <http://distrofico.blogspot.com/> blogspot.com/





[Non-text portions of this message have been removed]

"MD Breakthrough" Dr Riordan - update

     * Posted by Pat Furlong on November 12, 2009 at 7:09am

I spoke with Dr. Riordan yesterday. I found him very open and willing
to discuss his work.

To date he has performed the cell transplant procedure on three young
adults with Duchenne. Ryan is 23. Another young man was 28. The
procedure was considiered Compassionate use.

Dr. Riordan is using MSCs (human mesenchymal stem cells). The origin
of these cells is from bone marrow donors, age 18-65 and/or umbilical
cord cells. Dr. Riordan said there is greater potency of cells from
young donors (18+) and /or cord cells. The cells are grown in culture
and prepared for transplant. Adult derived cells are capable of 20/30
doublings. Umbilical cord derived -200 doublings. He suggested that
there is significant data to suggest MSCs integrate well and become
muscle cells. But what if the environment has more fat/fiber than
muscle? What evidence do we have the the MSCs will become muscle? Is
it possible, the MSCs could actually make things worse? These are my
questions and will be discussed in the near future.

Dr. Riordan said none of the young men are on an immune suppression
protocol, that they have had no problems with rejection.

Ryan's biopsy was peformed in his home state, Dystrophin testing was
done by Athena. Dr. Riordan thought the biopsy was done on the
Quadriceps muscle, but would need to check.

Strength testing pre and post was done by physical therapists at the
Stem Cell facility. Dr. Riordan did not have methods of testing, nor
the pre and post testing available for the call.
.
Dr. Riordan is not accepting patients at this time. The procedure is
quite expensive, in the neighborhood of $100,000 and the three young
men who received stem cells were done at no charge. Dr. Riordan is
interested in developing collaborations and clinical trials with
academic centers.

Dr. Riordan is kind and genuinely interested in understanding the
potential of MSCs in DMD, but significant questions remain before we
would be able to jump on this bandwagon. Dr. Riordan was leaving Costa
Rica today and will be traveling for a few days. We agreed, I would
connect with Lee Sweeney and Gillian Butler Browne to schedule a
conference call.

More on this in the next days/weeks.


Pat

--
Estevão Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

MD Breakthrough - What to Make of It

     * Posted by Pat Furlong on November 10, 2009 at 4:28pm

Whenever I hear the words "MD Breakthrough', my heart skips a beat. Is
it really? Often, it is in reference to a study in the mdx mouse. We
can cure mice. But people are not mice... just ask Victor Dubowitz.
And when the 'breakthrough' talks about a young man with Duchenne, it
feels like we are all standing at Attention!

Over the last couple of days, many of you have seen a news story that
recently aired about a young man named Ryan. I wanted to share with
you my thoughts about this story. For those of you who have not seen
this piece, check out the story by following this link:
http://www.kake.com/home/headlines/69538137.html.

I have watched the video of Ryan (by Jemelle Holopirek) several times
and admit to some skepticism. To be quite honest, I have a lot of
skepticism. My own sons were in the myoblast transfer trials of long
ago, receiving some extraordinary number of donor myoblasts in their
major muscles. It did not work, not at all. There was a moment when I
thought I saw something, when Chris and Patrick did something or said
something that seemed to suggest improvement. But there was nothing.
And I used the same words "feels better," "seems stronger," etc. All
generalities that cannot be measured.

I admit to some bias and for that reason, I wanted to get some
answers. I have called the 800 number for Dr. Neil H. Riordan, the
specialist featured in the story who is working from Costa Rica, and I
am waiting on a return call. The number is answered in the US, and the
person answering promised he would relay the message and have them get
back to me.

Conceptually, stem cells make sense. The goal would be to deliver
sufficient numbers of stem cells, to all of the muscles in the body,
or at least the major muscle groups and make sure they integrate with
existing muscle cells. The would potentially replace what is lost and
if all that works, one might expect, over time, to see improvement.

But - and there is always a "but" - I have any number of questions.

We know this is difficult. Myoblast transfer trials were done in the
late 80s and 90s. Jacques Tremblay continues with his myoblast
transfer trials in Canda, now moved to limb delivery. Cossu (Italy) is
moving toward limb delivery with mesioangioblasts. Gillian Butler
Browne is working on stem cells. Lee Sweeney has just requested a
small amount of money from us to expand some of his stem cell work
(adult-derived stem cells). Barriers to stem cell delivery have been
discussed in a variety of forums over the years. For Duchenne, and
many other conditions, stem cells are suggested to be the Holy Grail,
but it just has not been as easy as hoped for. Some years ago, we
sponsored Marie-Therese Little at the Fred Hutchinson Center in
Seattle, working on stem cells in the dog model. The barriers included
identifying the specific type of stem cell, engineering it to ensure
it would make muscle, delivery and rejection. And what does the immune
suppression protocol look like? Loads of questions and progress for
sure, but not magic.

The video describes three treatments over a year and a half with 46
shots into every major muscle group that resulted in a muscle biopsy
with "100% dystrophin levels."

As a community we have to ask the difficult questions. Some of them include:
* What muscle did they biopsy? How was the level assessed?
* What was Ryan's functional ability before the transplant? How has he
improved? His wonderful friend Clint (thank heaven for friends like
Clint!) described 'neck and trunk stronger' and 'balance better' and
'gained 30 lb.' On the video, Ryan moved only his hands/forearms. And
increased weight may not signifiy increased muscle mass and
circumference of a specific muscle does not mean increased strength.
* Muscle biopsy - who did the staining? Quantification of dystrophin?
* Transplanted cells - cells from Ryan's sister and donor umbilical
cords. What is the immune suppression protocol? Any concerns regarding
graft vs host rejection?
* Function: What tests pre- and post- were done to document benefit?

It seems to me Dr. Riordan would do well by convening a meeting with
researchers and physicians, including leading experts in the field
like Cossu, Gillian Butler-Browne, Terry Partridge, Lee Sweeney, Jerry
Mendell, and others. He could then describe his research,
procedure(s), data, and outcomes in detail answering a wide range of
questions.

I hope I do not sound overly negative. But I have been through this
with a wide range of treatments and promises made to our community.
And my frustration is not with Dr. Riordan. I hope, just like all of
you, that his work is the "breakthrough" this report claims it to be.
I just wish the media would understand that words such as
"breakthrough" should be used with caution because the reality is
often different from the message, and it is their responsibility to
ask questions and get substantiated answers before rushing on air.

--
Estevão Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

His website is still online, the URL is
http://www.divingadream.org/index.html


[Non-text portions of this message have been removed]

Whatever happened to Matt? The guy with DMD on a vent who went scuba diving. His
website, scuba diving dream, no longer exists.
 
There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...
My Blog: www.johnrsf.blogspot.com
Facebook: www.facebook.com/john.p.herrmann
Yahoo IM:johnrsf@...
Follow me on Twitter. http://twitter.com/johnrsf

[Non-text portions of this message have been removed]

There is no question we need health care reform. But this bill ain't it. If
there is no profit in health care services you can forget most of the technical
advancements in drugs and medical devices. Competition in the market works but
that seems to be a dirty word in Congress today. Government has screwed up
Medicare and Medicaid and I'm thinking this will not be any different. If the
uninsured are responsible (with government assistance) for choosing their health
insurance they will do a better job of choosing than government mandating what
coverage they can purchase or choose from...

<...b/c Medicare and Medicaid, in most states, are broken.>

Right, and the bill requires states to pay even more in Medicaid. Not to mention
$500 billion in Medicare cuts. If Medicare are Medicaid are broke, why on earth
would we even consider a whole new government run entitlement heath care
program? It's a recipe for disaster, I tell ya.... :-)

I don't think the healthcare bill is going to have much of an impact on
me personally. Some kind of healthcare bill needs to be passed though.
Really nobody knows what's going to work so I kind of think we need to
try something, see how it goes and then fix what doesn't work. My
feeling is that congress is probably compromising too much with the
private health insurance industry. It won't be a "government takeover"
but it might be a huge compromise with the devil. I think when it comes
to health insurance profit needs to be taken out of the equation. The
main goal of these private insurance companies is to make money. That
creates a huge conflict of interests and profit is put above the health
of individuals. So that's where the government has to come in. I really
think insurance companies should be banned from making a profit on basic
medical care. That or those who can't afford the high price of private
health insurance need to have access to non-profit health insurance (a
true public option or co-ops). I'm a bit uncomfortable with the idea of
the government giving people money to subsidize for-profit companies.

Jeff P.

mollygalli wrote:
>
> So I have been in a heated debate with my friends on facebook about
> the new healthcare bill and I have taken time to do some reading on
> it. I hope that it will provide coverage to those who don't have any,
> like my yonger sister who was unable to pay for a cast on her broken
> foot so she didn't get one. I also met a lady at our pharmacy who was
> in line ahead of me the other day and she had to not get her meds when
> she heard how much they cost and then she told me about her adult
> daughter who was at home suffering from seizures and couldn't pay for
> her meds or get health insurance because of her pre exisiting condition.
> My question is do you all think that this bill is going to help or
> hurt your current situation?
>
>

I personally feel I don't know everything about the bill to say yay or ney,
  but this article was interesting.  I do know something besides giving
uninsured people $2500 and getting rid of pre-existing clauses needs to be done
  b/c Medicare and Medicaid, in most states, are broken.  With people like
us  living longer & needing specialized care to stay in the community, and
the baby boomers getting older, long term care will become a hot issue.
Medicare as is has no long term care options besides nursing homes,  and
Medicaid options vary by state.  Something needs to be done.

_http://www.disabilityscoop.com/2009/11/09/health-care-reform/6077/_
(http://www.disabilityscoop.com/2009/11/09/health-care-reform/6077/)

Kimi


In a message dated 11/10/2009 5:30:41 P.M. Eastern Standard Time,
jedicharles@... writes:




I think any bill 1900 pages long is going to be a problem. I agree  with
what you said. This is what John McCain would have done.

From:  _dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
[mailto:_dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
]  On
Behalf Of Lee
Sent: Tuesday, November 10, 2009 2:14 PM
To: _dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
Subject:  Re: [DMD Pioneers] New Healthcare Bill

In my opinion, the current House  bill is one of the worst pieces of
legislation to ever come out of  Congress. There are many things that could
be done to fix the system  instead of total government control of
health-care. First, allow nationwide  choice of insurance plans from any
state (like car insurance). That would  bring down premiums. Second,
eliminate the pre-existing conditions  loophole. Third, for people whom
don't
get medicaid, medicare, insurance  from their job, or can't afford
insurance,
the government would give them a  $2500 voucher which has to be used to buy
insurance. That is just a start  to fix what's wrong with the system.

--- In _dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
<mailto:dmdpioneersmailto:dmdpionemai> ,
"Adele"  <jasona65@..j> wrote:
>
> I would say from what little  bit I understand what was in the House bill
I
> would say yes, it will  help those people situation. But I feel in the
long
> run, it will hurt  the country. Do not get me wring. I understand that the
> health care  system in this country needs and must be reformed. Without
> fixing how  insurance companies pay out their benefits and how much they
pay
>  vs. how much doctors charge and a whole slew of other things, the  system
> will come crashing down around us.
>
>
>
> I did read where this new bill will disallow the pre-existing  condition
> limits. But the problems as I see it will still exists  because nothing is
> being done about it.
>
> I am very  fearful about the "Public Option" I see how Medicaid and
Medicare
>  work now, very inefficient and time consuming. By adding thousands more
to
> similar programs, will just over power them.
>
>
>
> Adele
>
> _____
>
> From: _dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
  <mailto:dmdpioneersmailto:dmdpionemai>
[mailto:_dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
  <mailto:dmdpioneersmailto:dmdpionemai> ]
On
> Behalf  Of mollygalli
> Sent: Sunday, November 08, 2009 5:44 PM
> To: _dmdpioneers@dmdpioneers@dmd_ (mailto:dmdpioneers@yahoogroups.com)
<mailto:dmdpioneersmailto:dmdpionemai>
> Subject: [DMD  Pioneers] New Healthcare Bill
>
>
>
>
>
> So I have been in a heated debate with my friends on facebook about  the
new
> healthcare bill and I have taken time to do some reading on  it. I hope
that
> it will provide coverage to those who don't have  any, like my yonger
sister
> who was unable to pay for a cast on her  broken foot so she didn't get
one.
I
> also met a lady at our  pharmacy who was in line ahead of me the other day
> and she had to not  get her meds when she heard how much they cost and
then
> she told me  about her adult daughter who was at home suffering from
seizures
>  and couldn't pay for her meds or get health insurance because of her  pre
> exisiting condition.
> My question is do you all think that  this bill is going to help or hurt
your
> current situation?
>
>
>
>
>
> [Non-text portions of this  message have been removed]
>

[Non-text portions of this message  have been removed]







[Non-text portions of this message have been removed]

I think any bill 1900 pages long is going to be a problem.  I agree with
what you said.  This is what John McCain would have done.



From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Lee
Sent: Tuesday, November 10, 2009 2:14 PM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] New Healthcare Bill







In my opinion, the current House bill is one of the worst pieces of
legislation to ever come out of Congress. There are many things that could
be done to fix the system instead of total government control of
health-care. First, allow nationwide choice of insurance plans from any
state (like car insurance). That would bring down premiums. Second,
eliminate the pre-existing conditions loophole. Third, for people whom don't
get medicaid, medicare, insurance from their job, or can't afford insurance,
the government would give them a $2500 voucher which has to be used to buy
insurance. That is just a start to fix what's wrong with the system.

--- In dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com> ,
"Adele" <jasona65@...> wrote:
>
> I would say from what little bit I understand what was in the House bill I
> would say yes, it will help those people situation. But I feel in the long
> run, it will hurt the country. Do not get me wring. I understand that the
> health care system in this country needs and must be reformed. Without
> fixing how insurance companies pay out their benefits and how much they
pay
> vs. how much doctors charge and a whole slew of other things, the system
> will come crashing down around us.
>
>
>
> I did read where this new bill will disallow the pre-existing condition
> limits. But the problems as I see it will still exists because nothing is
> being done about it.
>
> I am very fearful about the "Public Option" I see how Medicaid and
Medicare
> work now, very inefficient and time consuming. By adding thousands more to
> similar programs, will just over power them.
>
>
>
> Adele
>
> _____
>
> From: dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com>
[mailto:dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com> ]
On
> Behalf Of mollygalli
> Sent: Sunday, November 08, 2009 5:44 PM
> To: dmdpioneers@yahoogroups.com <mailto:dmdpioneers%40yahoogroups.com>
> Subject: [DMD Pioneers] New Healthcare Bill
>
>
>
>
>
> So I have been in a heated debate with my friends on facebook about the
new
> healthcare bill and I have taken time to do some reading on it. I hope
that
> it will provide coverage to those who don't have any, like my yonger
sister
> who was unable to pay for a cast on her broken foot so she didn't get one.
I
> also met a lady at our pharmacy who was in line ahead of me the other day
> and she had to not get her meds when she heard how much they cost and then
> she told me about her adult daughter who was at home suffering from
seizures
> and couldn't pay for her meds or get health insurance because of her pre
> exisiting condition.
> My question is do you all think that this bill is going to help or hurt
your
> current situation?
>
>
>
>
>
> [Non-text portions of this message have been removed]
>





[Non-text portions of this message have been removed]

In my opinion, the current House bill is one of the worst pieces of legislation
to ever come out of Congress. There are many things that could be done to fix
the system instead of total government control of health-care. First, allow
nationwide choice of insurance plans from any state (like car insurance). That
would bring down premiums. Second, eliminate the pre-existing conditions
loophole. Third, for people whom don't get medicaid, medicare, insurance from
their job, or can't afford insurance, the government would give them a $2500
voucher which has to be used to buy insurance. That is just a start to fix
what's wrong with the system.

--- In dmdpioneers@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> I would say from what little bit I understand what was in the House bill I
> would say  yes, it will help those people situation.  But I feel in the long
> run, it will hurt the country.  Do not get me wring.  I understand that the
> health care system in this country needs and must be reformed.  Without
> fixing how insurance companies pay out their benefits and how much they pay
> vs. how much doctors charge and a whole slew of other things, the system
> will come crashing down around us.
>
>
>
> I did read where this new bill will disallow the pre-existing condition
> limits.  But the problems as I see it will still exists because nothing is
> being done about it.
>
> I am very fearful about the "Public Option"  I see how Medicaid and Medicare
> work now, very inefficient and time consuming.  By adding thousands more to
> similar programs, will just over power them.
>
>
>
> Adele
>
>   _____
>
> From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
> Behalf Of mollygalli
> Sent: Sunday, November 08, 2009 5:44 PM
> To: dmdpioneers@yahoogroups.com
> Subject: [DMD Pioneers] New Healthcare Bill
>
>
>
>
>
> So I have been in a heated debate with my friends on facebook about the new
> healthcare bill and I have taken time to do some reading on it. I hope that
> it will provide coverage to those who don't have any, like my yonger sister
> who was unable to pay for a cast on her broken foot so she didn't get one. I
> also met a lady at our pharmacy who was in line ahead of me the other day
> and she had to not get her meds when she heard how much they cost and then
> she told me about her adult daughter who was at home suffering from seizures
> and couldn't pay for her meds or get health insurance because of her pre
> exisiting condition.
> My question is do you all think that this bill is going to help or hurt your
> current situation?
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Feel free to add me







Kevin M. Rudolph
Louisville, Kentucky 40214

E-mail:  turbokev@...
Web sites:   <http://www.turbokev.com> http://www.turbokev.com

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[Non-text portions of this message have been removed]