Research

[Guest guest]



Hey Betty,

I called the number for the research and left a message, maybe they have a porphyria study as well.I'm getting ready to go do labs which I love now becuse taking the blood eases the porphyria.Friday I soaked my hands in Holy water and they seem to be drying up some.I drank a bunch also as it was at a grotto spring but that's the night I geeked on about smoking so maybe the wrong spirit went to my head.I haven't acted like that in years and I'm sorry to .I did feel like a freak till you shared so pleeez keep posting.The darn sun came out so I need to find my gloves before I go out for labs. I Love Ya Pam

Re: [ ] urine therapy was Anti-biotics and HCV....big mistake??? Date: Thursday, September 24, 2009, 7:53 PM

I am trying my absolute best to ignore your posts but sometimes it's just about impossible.You are welcome to drink your own urine and it won't bother me at all. I'm not going to spend any time researching something that my mind and body can not fathom except in the purely negative. So, you do what you are comfortable with and I'll do the same.I have to ask though - how do justify lecturing about cigarette smoking when you "have" to drive into town to pick up your Methadone scripts??? Are you going to try to tell me that Methadone is not addictive and in fact, more so than Heroin?? Surely to heavens there must be a much better natural source, for whatever you have to use it for, than driving to town to pick up a script that wires you both physically and mentally. Even legal pot would be a much better choice. Hell, even street pot would be better!!For me, I do not plan to get wired to any medications, until the times comes, if it ever does, that I just don't care anymore that I'm addicted. Meaning, that I'm close to the end of life !! I will and am, wide open to eating better although I hardly eat now and my body already tells me what it wants and doesn't want. I still work part-time at least and do not have the time nor the energy to research every funky thing I've seen posted on any of these sites, that I already know I would not have the least interest in trying. So, once again , stop with the lectures - they do no good for anyone !!! Then, perhaps you would have more time to research why you would have allowed yourself to get wired to Methadone and still justify going after anyone else for their addiction of choice???Gloria

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[Guest guest]

Betty:Yup, I think I am out of the funk again for now!! Unfortunately, that usually takes something that will shift my thinking from self to all of us sufferers together. On Friday, I found that with a newspaper article from my own little area, that our little City Councillors were behind a suggested by Health Care to support offering Crack Pipe Kits as a Harm Reduction tool.I've blasted each and every one of them and then went on to the overseerers of Health Care here - called Vancouver Island Health Authority. Although my e-mails were long, my basic question of all of them was - so you are interested in some attempt to thwart the continuation of passing this disease. Yet for those that have already been struck, we don't even get acknowledgement

and instead are stigmatized into one category and a lot are afraid to come out of their silence.By the way, I am just waiting for another Ultra Sound on my kidneys; but, the previous ones have all shown nothing and usually that's as far as they go.Canada is a very beautiful place and I have been all across it as a kid. On this particular island, where I live is, a little piece of recreational haven for those that are into it. Literally, in the winter, one could go skiing in the morning, golfing in the afternoon and fishing for Salmon in the evening. Or they could at least stretch that into a 3 day period. However, the crossing back and forth on the ferries gets old very quickly!!! Real islanders hardly ever think to leave here just to go to the city. I've only been doing it because the best Hep C Drs are there. At the bottom end of the island there

is the Capital City - ; but, once out of the rat race of city dwelling, I just simply would never go back.Gloria

Hey Gloria, and everyoneI ve been not feeling too good emotionally, and when that happens this may not be the place to communicate, i see in my absence has found someone else to attack their opinions, im sorry for that. Gloria I hope u are out of the funk, I work in a animal hospital and we see all the same stuff as in us humans, dark urine whether brown, red, is usally a sign of blood, sometimes OLD blood I would consider gettiing chkd for kidney stones. also porphyria will cause your urine to turn purple if in the sunlight, and this is aother side affect from hpc.Im sure you know , flush out your kidneys with water or cranberry juice. Hang in there . Its just another curveball in life There is a research org who is currently paying 400.00 for a telephone

research m not all are eligible, but they screen you o-t-p quickly i was not eligible because they want you to be on some tx currently. anyone interested it is www.baltimoreresear ch.com or 410-583-9991 request to be screened for the burgundy study. I do not say this because 400.00 is helpful but more for the RESEARCH. isnt that why we all entered this site anyway As for

I stopped communicating and became a non-responded (AGAIN) lol, i mean on this site because i only want positivity in my thoughts. I read back on my postings to you in the past when i too responded to your negativity and when i read them i actually thought "I SAID THAT" you might do the same to reflect on how we express ourselves in frustation to each other, sometimes not so good. so i take this time to aplolgize for any mis-understanding we may have had in text-and say that i can tell from your anger that you too are sufferring. We all are, and should not lash out at each other but to each other. Non of us are the know-all but just maybe we each have something to offer.I pray that lets go of that anger to enable herself to heal and help others do the same. Gloria , Canada sounds beautififull, taking a ferry sounds like fun., By the way I think dog is pregnant we wont know for sure for about 2

more

weeks. I should keep one and name it Squirt lol. Also thanks for the large font my eyes got exteremly bad after treatment. I did not need glasses at all untill about two months post treatment, so i sincerely appreciate it. It makes it easier and faster to read thru about 100 posting a day. May your day be bright joyfull and happy!!

betty

From: Gloria <gadamscan (DOT) ca> Sent: Saturday, September 26, 2009 1:08:39 AMSubject: Re: [ ] urine therapy was Anti-biotics and HCV....big mistake???

I so totally agree with you on all points. My pharmacist knows me by name and so do many of the staff. I trust them to keep an eye on my meds vs my liver. Not that I want any more; but, if I were be prescribed a new med, I'd ask at the pharmacy what effects it will have to my liver first and then any other warnings. Probably because I do not use a big chain store, I feel that my pharmacist and his staff are watching out for my best interest.Gloria

If I may be allowed to interject a comment here.

Each of us needs to manage our own health care.

The doctors and nurses work for us. We are the boss.

Anyone who blindly follows the doctor sooner or later ends

up dead.

One other thing I found out from years working in a pharmacy

is that many doctors don't know squat about drugs. If you want

to talk to someone about a drug ask your pharmacist, don't ask your doctor.

The doctor likely will regurgitate whatever the drug rep who pushed that

particular drug told them to say.

Saw an interesting movie about the corruption of big pharma last night

The Constant Gardener about how big pharma was using the people of Africa

as guinea pigs for their new drugs and even killed over it. Of course it's "fiction."'

But it sure seemed plausable.‹(•¿•)› Ress Felton, CA"Drink water from your own cistern, flowing water from your own well." (The Book of Proverbs 5:15)

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] urine therapy was Anti-biotics and HCV....big mistake??? Date: Thursday, September 24, 2009, 7:53 PM

I am trying my absolute best to ignore your posts but sometimes it's just about impossible.You are welcome to drink your own urine and it won't bother me at all. I'm not going to spend any time researching something that my mind and body can not fathom except in the purely negative. So, you do what you are comfortable with and I'll do the same.I have to ask though - how do justify lecturing about cigarette smoking when you "have" to drive into town to pick up your Methadone scripts??? Are you going to try to tell me that Methadone is not addictive and in fact, more so than Heroin?? Surely to heavens there must be a much better natural source, for whatever you have to use it for, than driving to town to pick up a script that wires you both physically and mentally. Even legal pot would be a much better choice. Hell, even street pot would be better!!For me, I do not plan to get

wired to any medications, until the times comes, if it ever does, that I just don't care anymore that I'm addicted. Meaning, that I'm close to the end of life !! I will and am, wide open to eating better although I hardly eat now and my body already tells me what it wants and doesn't want. I still work part-time at least and do not have the time nor the energy to research every funky thing I've seen posted on any of these sites, that I already know I would not have the least interest in trying. So, once again , stop with the lectures - they do no good for anyone !!! Then, perhaps you would have more time to research why you would have allowed yourself to get wired to Methadone and still justify going after anyone else for their addiction of choice???Gloria

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[Guest guest]

I am intending a virtual seminar next week, Feb 17th, titled " Beyond the Bench:

The Perceived Price of Activism " . I wanted to get some comments from others here

before I see the talk.

http://www.sefora.org/feb-2011-seminar/

I am interested to know how many of those in are directly involved in

researching CMT. If you are researching, are you active in other ways in the CMT

community? Why/Why not? Would you be researching it if you could? Do you feel

that creating awareness/raising money is enough? What kind of credit do you give

to those who do the " real work " ? If you neither raise awareness or research,

what are your reasons for doing so?

I feel like this debate is like all those pink ribbons and fund-raisers you see

for cancer research, while all the scientists behind their respective benches

don't really get very much credit from the community.

Any comments will probably help figure out how I feel about doing my own

research and my position in the community.

Thanks,

[Guest guest]

,

I am not a clinical researcher or scientist. However I am a 'student' of

studying CMT, especially interested in the 'medical anthropology' of CMT.

Oh yes, I am active in the CMT community. For one thing, I founded 13

years ago and have keep it rolling. I am also a Groups Facilitator for the CMTA.

I also created a fundraising model of winetastings to benefit STAR last year,

and that has resulted in a year long series of winetastings at Bella Cavalli

Farms which donates a percent of sales to 3 organizations, CMTA being one of

them. I'm also involved in using social media for CMT awareness.

Would I be researching if I could? (I am assuming you mean in a laboratory

model) Maybe, with what I know now, maybe if I were 35 years younger I'd take

the MCATs. Something about culturing cells or looking through a microscope for

8-10 hours a day doesn't appeal to me. In reality I am a free spirit and cannot

be contained in a sterile environment. I need air, land, grass, trees, and an

open horizon on all levels to live and do my best work.

Why do I do this? Because it is NEEDED, and I have the talent and drive to do

it!

I feel creating awareness/raising money is NOT done enough!

Real work? Are you kidding me? When anyone with CMT steps outside themselves to

VOLUNTEER time, writing, speaking, blogging, fundraising, etc., this is the

" real work " . We have a progressive neuromuscular disease. Our entire peripheral

nervous system requires constant care and maintenance. I feel anyone who can go

the extra miles in CMT awareness and fundraising with muscles that have to work

twice as hard to do half the work is doing the " real work " .

Everyday parents of CMT children are educating schools and creating awareness of

the disorder and needs though 504 and IEP plans.

As far as " pink ribbons and fundraisers for cancer research " - that's made a

HUGE difference. The B.C. people have gone a million miles ahead of CMT in

awareness, marketing, public relations and fundraising. When I saw the Breast

Cancer pink ribbon on a wine bottle at Albertsons, I got my idea for wine

tastings that had the CMTA label on them. Not only that, but last year I asked

Shadoe s if he would consider making a PSA. He did and that was aired on

about 800 radio stations across the nation. Many of us on Facebook posted

information about CMT and peripheral neuropathy. CMT Awareness Week last year

made a HUGE difference!

Prior to this, in the early days of , we had violet awareness ribbons that

were distributed to thousands in different venues and became very popular.

Scientists and researchers get plenty of credit for what they do. They are

employed steadily, they are paid well, they bring honor to themselves, their

institution, and organizations they belong to. They are often sought after

speakers for a variety of conferences and group meetings.

I hope you will plan on being involved in this year's September National

Awareness Month. So many good people, with and without CMT are joining in some

great plans. Hope you've got a Facebook account, you can find more on that very

soon.

I could go on and on. But enough said. Just curious, what exactly is the nature

of your research? What institution are you with? Any chance we can have copies

of your previous research for our Files?

Gretchen

[Guest guest]

Hi ,

 

Your post didn’t generate many responses, perhaps due to the inherent bias and

assumptions in the questions you asked.

 

There are many on this site, and in the CMT community, that give of themselves

freely to increase CMT awareness, raise funds for research, and assist others

with everyday issues.  Are these voluntary (free) contributions in the

community, which are oftentimes made at great physical and financial sacrifice,

less valuable than the contributions made by (compensated) researchers?

Your questions imply community involvement is less valuable.  I strongly

disagree and find it offensive to those who give their all, freely helping

others and trying doing everything within their power and capability to help

find a cure.

 

In looking at the seminar you plan to attend, it doesn’t seem to be about the

worthlessness of activism, as I presumed from your questions, but quite the

opposite.  Specifically, it sounds like this author will be discussing how a

researcher can get more involved in community activism without harming his/her

career.  This implies community involvement is a valuable contribution.

 

I was diagnosed with CMT five years ago.  The changes I’ve seen in the last

five years have been amazing, in terms of increased awareness about the disease

and increased funding for exciting research projects.  This didn’t happen in

a vacuum.  The efforts made by those within the CMT community, as well as those

who support this community, did this.  ‘Hats off’ to those who did the

‘real work’ of making this happen, including the volunteers, the

organizations, the physicians, the congressmen, etc., who made this happen.

I’ve observed that this is quite a team effort, with every one deserving

credit for extending themselves and doing what was in their power to do.

in So Calif

(40's, CMT1a)

From: K <cutiedudie2002@...>

Subject: Research

Date: Saturday, February 12, 2011, 2:06 PM

 

I am intending a virtual seminar next week, Feb 17th, titled " Beyond the Bench:

The Perceived Price of Activism " . I wanted to get some comments from others here

before I see the talk.

http://www.sefora.org/feb-2011-seminar/

I am interested to know how many of those in are directly involved in

researching CMT. If you are researching, are you active in other ways in the CMT

community? Why/Why not? Would you be researching it if you could? Do you feel

that creating awareness/raising money is enough? What kind of credit do you give

to those who do the " real work " ? If you neither raise awareness or research,

what are your reasons for doing so?

I feel like this debate is like all those pink ribbons and fund-raisers you see

for cancer research, while all the scientists behind their respective benches

don't really get very much credit from the community.

Any comments will probably help figure out how I feel about doing my own

research and my position in the community.

Thanks,

________________________________________________________________________________\

____

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

http://answers./dir/?link=list & sid=396545367

[Guest guest]

Hi Coutney:

I spent 18 years running CMT International and have maintained a CMT information

website ever since and now a blog. Just having CMT makes us a representative for

the disease. How we live our lives, how we struggle and keep going, and how we

give of ourselves to

others speaks volumes.

Someone who does research on CMT commits themselves to the search

but they can walk away from it at any time. We, on the other hand,

are committed to a lifetime with the disease trying to find out what

it is and how we can best live with it. And, in rare cases, some

people committed to scientific research on the disease also have it.

We are all just as worthy in what we do for each other, in

understanding the disease and in researching it.

Crabtree C.M., O.Ont., O.M.C., B.A., LL.D.(hon.)

One Springbank Drive

St. Catharines, ON, Canada L2S 2K1

905-685-0496

linda@...

www.AccessibleNiagara.com

www.NiagaraShares.com

www.Crabtree.com

www.stcatharinesart.com

http://www.lindacrabtree.wordpress.com

Community Action Award (ON Govt.) 2009

Tourism Industry Association of Ontario Volunteer of the Year 2008

On 14-Feb-11, at 3:23 PM, wrote:

> Hi ,

>

> Your post didn’t generate many responses, perhaps due to the

> inherent bias and assumptions in the questions you asked.

>

> There are many on this site, and in the CMT community, that give of

> themselves freely to increase CMT awareness, raise funds for

> research, and assist others with everyday issues. Are these

> voluntary (free) contributions in the community, which are

> oftentimes made at great physical and financial sacrifice, less

> valuable than the contributions made by (compensated) researchers?

>

> Your questions imply community involvement is less valuable. I

> strongly disagree and find it offensive to those who give their all,

> freely helping others and trying doing everything within their power

> and capability to help find a cure.

>

> In looking at the seminar you plan to attend, it doesn’t seem to be

> about the worthlessness of activism, as I presumed from your

> questions, but quite the opposite. Specifically, it sounds like

> this author will be discussing how a researcher can get more

> involved in community activism without harming his/her career. This

> implies community involvement is a valuable contribution.

>

> I was diagnosed with CMT five years ago. The changes I’ve seen in

> the last five years have been amazing, in terms of increased

> awareness about the disease and increased funding for exciting

> research projects. This didn’t happen in a vacuum. The efforts

> made by those within the CMT community, as well as those who support

> this community, did this. ‘Hats off’ to those who did the ‘real

> work’ of making this happen, including the volunteers, the

> organizations, the physicians, the congressmen, etc., who made this

> happen.

>

> I’ve observed that this is quite a team effort, with every one

> deserving credit for extending themselves and doing what was in

> their power to do.

>

> in So Calif

> (40's, CMT1a)

>

>

>

> From: K <cutiedudie2002@...>

> Subject: Research

>

> Date: Saturday, February 12, 2011, 2:06 PM

>

>

>

> I am intending a virtual seminar next week, Feb 17th, titled " Beyond

> the Bench: The Perceived Price of Activism " . I wanted to get some

> comments from others here before I see the talk.

> http://www.sefora.org/feb-2011-seminar/

>

> I am interested to know how many of those in are directly

> involved in researching CMT. If you are researching, are you active

> in other ways in the CMT community? Why/Why not? Would you be

> researching it if you could? Do you feel that creating awareness/

> raising money is enough? What kind of credit do you give to those

> who do the " real work " ? If you neither raise awareness or research,

> what are your reasons for doing so?

>

> I feel like this debate is like all those pink ribbons and fund-

> raisers you see for cancer research, while all the scientists behind

> their respective benches don't really get very much credit from the

> community.

>

> Any comments will probably help figure out how I feel about doing my

> own research and my position in the community.

>

> Thanks,

>

>

>

> __________________________________________________________

> Food fight? Enjoy some healthy debate

> in the Answers Food & Drink Q & A.

> http://answers./dir/?link=list & sid=396545367

>

>

[Guest guest]

I'm sorry, I guess I didn't realize how biased it sounded, or how biased I was.

I talked with my boyfriend about it for a while and I realized that I really

just didn't understand activism fundamentally. I know that activism and

fundraising is very important and that people will do anything they can that is

within their skill set. It's just hard for me to see the pathway between

community awareness and policy change. So I'll keep trying to understand and I'm

sorry to anyone I offended. Just try to be understanding with me too.

[Guest guest]

Very well stated, .

> >

> > From: K <cutiedudie2002@...>

> > Subject: Research

> >

> > Date: Saturday, February 12, 2011, 2:06 PM

> >

> >

> >

> > I am intending a virtual seminar next week, Feb 17th, titled " Beyond

> > the Bench: The Perceived Price of Activism " . I wanted to get some

> > comments from others here before I see the talk.

> > http://www.sefora.org/feb-2011-seminar/

> >

> > I am interested to know how many of those in are directly

> > involved in researching CMT. If you are researching, are you active

> > in other ways in the CMT community? Why/Why not? Would you be

> > researching it if you could? Do you feel that creating awareness/

> > raising money is enough? What kind of credit do you give to those

> > who do the " real work " ? If you neither raise awareness or research,

> > what are your reasons for doing so?

> >

> > I feel like this debate is like all those pink ribbons and fund-

> > raisers you see for cancer research, while all the scientists behind

> > their respective benches don't really get very much credit from the

> > community.

> >

> > Any comments will probably help figure out how I feel about doing my

> > own research and my position in the community.

> >

> > Thanks,

> >

> >

> >

> > __________________________________________________________

> > Food fight? Enjoy some healthy debate

> > in the Answers Food & Drink Q & A.

> > http://answers./dir/?link=list & sid=396545367

> >

> >

>

>

>

>