The Conference

[Guest guest]

Wow that would be great to have the conference in the summer... great idea! Make

it so much easier to plan and not have school to worry about!

It is probably something that is feasible as it is early enough to discuss and

change a conference date at this point...

I so wish I could have gone.

I heard the docs that spoke were wonderful! It is so nice to hear a heart

warming story from a family like Lori's too!!

I am definitely going to try and make it next year! Make a few day trip and do

the Hershey thing too! Placing faces to the names in this group would be great.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

I'll add my vote for a summer conference too. While 's bad fever

episode is ultimately what kept us from going, the timing was also really

difficult right at the end of the first week of school. If it was in the

summer, our whole family could go and we could make a vacation out of it,

instead of just and I dashing down one day and back the next and

leaving the kids at home.

It sounds like it was so wonderful. I'm really sorry we missed it.

-

On 9/12/06, Fran Bulone <fbulone@...> wrote:

>

> Wow that would be great to have the conference in the summer... great

> idea! Make it so much easier to plan and not have school to worry about!

>

>

[Guest guest]

Hi Trish.

It was great to meet you and your family. I am sorry

your daughter was flaring, but so glad it happened

when and where it did, surrounded by people who

understood.

Let me clarify....Dr. Groh did NOT mention holding the

Nino FundPFS Conference in conjunction with the

Arthritis Conference...that is an entirely seperate

event-and although, many of the PFS kids have joint

pain and arthraliga involvement, we ARE NOT a part of

The Arthritis Foundation...they are amazing and are

independent!!!! The Nino Fund is growing and will

offer many wonderful things next year. We have

already scheduled our date for the first Saturday

following Labor Day-it does mean some juggling for

school and sports, but it is a very convenient time

for the hospital and with fundraising events, it's

great time of year...besides, PA is beautiful at the

beginning of Fall.....

Best wishes to you and lots of prayers,

Lori

--- trish santos <summerday148@...> wrote:

>

> Thank you Lori for all your hard work!! The

> conference was wonderful. Defenitely worth the 900

> mile drive. I wish that Sami hadn't of been so

> sick, but she made it till 6:30 at Hershey Park

> until her fever spiked. We had a great time, and

> the speakers were wonderful, it was so nice meeting

> everyone. I wish I would have had more chance to

> chat with everyone, instead of being so occupied

> with Sami, but maybe next year.

>

> I was confused by your post about next years date,

> I though you and Dr. Groh were combining the

> conference to the July 4th conference with the

> Arthritis Foundation. He said there would be

> breakout sessions just on PFS. He also said that he

> was going to try to get Dr. Kastner to come and

> speak. If not, is there any way the conference can

> be done in the summer time, or over Labor Day. I

> know I heard from others from any distance, its so

> hard to take the kids out of school right after they

> have started, and they miss so many days as it is.

> I'm sure you would have so many other families be

> able to make the trip. It was such a great

> experience, I hope many more families can come next

> year!

>

> Also I wanted to tell you that you almost brought

> tears to my eyes when you were talking about the

> divorce rate. I also was in your situation when my

> second daughter was so sick. She had a major

> surgery to repair a colstomy and I was convinced she

> was going to die. She was in surgery for 9 hours

> and my husband didn't come to the hospital. I was

> thinking, " how could my husband make my go through

> this by myself, doesn't he care anything about us? "

> I was so upset that I was ready to pack my bags and

> leave him that day! While I was planning leaving, I

> picked up a pamplet from an NICU support group and

> saw the figure that 75% of couples divorce and the

> main reason is that spouses handle this stress

> different, some people (mostly men) can not show

> there true feelings, and a lot are in denial until

> they can emotianaly handle it. I realized at that

> time it wasn't because he didn't want to be there,

> it was because he couldn't, emotionaly he couldn't

> handle it. That was 12

> years ago, and faced with the problem again, I have

> no questions about my marriage, I know, he does

> what he can and I have accepted it and my family and

> I are happier because I have accepted it. It was

> nice to find someone else that had gone through this

> and come to the same conclusion.

>

> Trish

>

>

>

>

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

> All-new - Fire up a more powerful email

> and get things done faster.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Oh....

What Dr. Groh was referring to, was presenting a

segment on PFS and The Nino Fund, just as we did at

our conference and just as I do at other conferences

I've attended or spoke at. Does this clarify that??

Thanks. Sorry abt the confusion...

--- trish santos <summerday148@...> wrote:

>

> Thank you Lori for all your hard work!! The

> conference was wonderful. Defenitely worth the 900

> mile drive. I wish that Sami hadn't of been so

> sick, but she made it till 6:30 at Hershey Park

> until her fever spiked. We had a great time, and

> the speakers were wonderful, it was so nice meeting

> everyone. I wish I would have had more chance to

> chat with everyone, instead of being so occupied

> with Sami, but maybe next year.

>

> I was confused by your post about next years date,

> I though you and Dr. Groh were combining the

> conference to the July 4th conference with the

> Arthritis Foundation. He said there would be

> breakout sessions just on PFS. He also said that he

> was going to try to get Dr. Kastner to come and

> speak. If not, is there any way the conference can

> be done in the summer time, or over Labor Day. I

> know I heard from others from any distance, its so

> hard to take the kids out of school right after they

> have started, and they miss so many days as it is.

> I'm sure you would have so many other families be

> able to make the trip. It was such a great

> experience, I hope many more families can come next

> year!

>

> Also I wanted to tell you that you almost brought

> tears to my eyes when you were talking about the

> divorce rate. I also was in your situation when my

> second daughter was so sick. She had a major

> surgery to repair a colstomy and I was convinced she

> was going to die. She was in surgery for 9 hours

> and my husband didn't come to the hospital. I was

> thinking, " how could my husband make my go through

> this by myself, doesn't he care anything about us? "

> I was so upset that I was ready to pack my bags and

> leave him that day! While I was planning leaving, I

> picked up a pamplet from an NICU support group and

> saw the figure that 75% of couples divorce and the

> main reason is that spouses handle this stress

> different, some people (mostly men) can not show

> there true feelings, and a lot are in denial until

> they can emotianaly handle it. I realized at that

> time it wasn't because he didn't want to be there,

> it was because he couldn't, emotionaly he couldn't

> handle it. That was 12

> years ago, and faced with the problem again, I have

> no questions about my marriage, I know, he does

> what he can and I have accepted it and my family and

> I are happier because I have accepted it. It was

> nice to find someone else that had gone through this

> and come to the same conclusion.

>

> Trish

>

>

>

>

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

> All-new - Fire up a more powerful email

> and get things done faster.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Dear list members - and especially Gigi, Attending the conference was an absolutely wonderful experience. I can't imagine the amount of work that must have gone in to putting it all together. We are so appreciative. While reports of trials, the physicians' private practice experiences and the very interesting input from the pharmacists (Skip Lenz and n Quinn) were gripping, it was particularly warming to put *faces* to some of those dear souls who have been working so hard to get the LDN word out. Before I share some of my notes (really spotty), I want to make a blanket apology to the dear members of this list who attended the conference. I am so sorry that we didn't get to meet most of you. (my husband, who has leukemia) has up days and some that are downish - fatigue that sometimes essentially forces him to lie down. While he

started the day well, he was really forcing himself at the day wore on. We left as soon as the conference was over. As soon as we reached our room, he slept as if drugged. Gigi, I am particularly sorry we weren't able to stay and meet you properly. ( Please remember that my notes are spotty.. I'm so relieved that there will be a DVD available soon. Some of this will be old hat to many of you, but and I are new to all of this, so I just kept writing as quickly as I could. OK, here we go. ************************************************************ Gluck, MD - Emcee & Overview "The Year in LDN" He addresses the *generic drug/pharmaceutical/trial support* issue. 2007 is the tipping point. 6 to 7 trials occurring. Some trials occurring at NIH, Penn State, Mali, Milan (data to be

compiled soon). Dr. MC Candless is treating autistic children with LDN. Endorphins are beneficial supporters of the immune system. A weak immune system can become confused and attack ones body. A conference re MS took place in Prague 1 week ago. A 6-month study of 40 persons. Treatment with LDN resulted in improved walking and ADL's. Safe treatment/minimal side effects. But need to know if endorphins rise as the disease process improves. LDN for Research Fund sponsors study, 80 subjects. Presentation to be after December. Results to be given to the Academy of Neurology. Study at Stanford, 40 persons, CFS/fibromyalgia, 21 week controlled trial, results to be presented July 1. Mind/Brain Consortium - MS, 16 week controlled study, 36 persons, re mental fog, psyco-active

changes and symptoms. National MS Society has been an LDN-resistant group but is softening considerably as of late. Gave $44,000 to Penn State - animal study to determine the outcomes of high dose vs low dose. Encephalitis in rats - high dose makes worsens rats' conditions. Low dose improves rats' conditions. [i may have gotten the $ number wrong.] *********************************************************** I'm sure that I didn't record as accurately as I'd have liked. Please take my probable goofs in to account. Tomorrow I'll try to send off my notes of Jill , MD's presentation. Warm wishes, Jan

[Guest guest]

Thanks Jan, I think that was a pretty darn good accounting of what Dr. Gluck had to say.

Thanks for doing such a fabulous job of putting everything together (and Suzie too). I don't know from behind the scenes, but from where I sat it looked like everything went without a hitch.

I was sorry that Dr. Lawrence was sick and could not attend. Also Bruce Gillette was sick in hospital as well. I was really looking forward to meeting each of them. I hope they are both well now.

It was however great to meet Cyndi, Skip and Adam, and her wonderful mother Lola, Fritz from Goodshape, Crystal, Jann, Jen, Bill and his sister, Kent and Ann and so many others. I think talking to others and hearing testimonials during break and lunch was the best part.

My best

Aletha

[low dose naltrexone] The Conference

Dear list members - and especially Gigi,

Attending the conference was an absolutely wonderful experience. I can't imagine the amount of work that must have gone in to putting it all together. We are so appreciative. While reports of trials, the physicians' private practice experiences and the very interesting input from the pharmacists (Skip Lenz and n Quinn) were gripping, it was particularly warming to put *faces* to some of those dear souls who have been working so hard to get the LDN word out.

Before I share some of my notes (really spotty), I want to make a blanket apology to the dear members of this list who attended the conference. I am so sorry that we didn't get to meet most of you. (my husband, who has leukemia) has up days and some that are downish - fatigue that sometimes essentially forces him to lie down. While he started the day well, he was really forcing himself at the day wore on. We left as soon as the conference was over. As soon as we reached our room, he slept as if drugged. Gigi, I am particularly sorry we weren't able to stay and meet you properly. (

Please remember that my notes are spotty.. I'm so relieved that there will be a DVD available soon. Some of this will be old hat to many of you, but and I are new

to all of this, so I just kept writing as quickly as I could. OK, here we go.

************************************************************

Gluck, MD - Emcee & Overview "The Year in LDN"

He addresses the *generic drug/pharmaceutical/trial support* issue.

2007 is the tipping point. 6 to 7 trials occurring. Some trials occurring at NIH, Penn State, Mali, Milan (data to be compiled soon). Dr. MC Candless is treating autistic children with LDN.

Endorphins are beneficial supporters of the immune system. A weak immune system can become confused and attack ones body.

A conference re MS took place in Prague 1 week ago. A 6-month study of 40 persons. Treatment with LDN resulted in improved walking and ADL's. Safe treatment/minimal side effects. But need to know if endorphins rise as the disease process improves.

LDN for Research Fund sponsors study, 80 subjects. Presentation to be after December. Results to be given to the Academy of Neurology.

Study at Stanford, 40 persons, CFS/fibromyalgia, 21 week controlled trial, results to be presented July 1.

Mind/Brain Consortium - MS, 16 week controlled study, 36 persons, re mental fog, psyco-active changes and symptoms.

National MS Society has been an LDN-resistant group but is softening considerably as of late. Gave $44,000 to Penn State - animal study to determine the outcomes of high dose vs low dose. Encephalitis in rats - high dose makes worsens rats' conditions. Low dose improves rats' conditions. [i may have gotten the $ number wrong.]

***********************************************************

I'm sure that I didn't record as accurately as I'd have liked. Please take my probable goofs in to account. Tomorrow I'll try to send off my notes of Jill , MD's presentation.

Warm wishes,

Jan

[Guest guest]

Just read your post and saw Bruce is sick...I was

wondering why he hasn't answered my email.. now I

know.

So sorry for that news hope he is OK. I will just

be patient and wait until he gets back online.

Dee

--- Aletha Wittmann <Aletha@...> wrote:

> Thanks Jan, I think that was a pretty darn good

> accounting of what Dr. Gluck had to say.

>

> Thanks for doing such a fabulous job of

> putting everything together (and Suzie too). I

> don't know from behind the scenes, but from where I

> sat it looked like everything went without a hitch.

>

>

> I was sorry that Dr. Lawrence was sick and could not

> attend. Also Bruce Gillette was sick in hospital as

> well. I was really looking forward to meeting each

> of them. I hope they are both well now.

>

> It was however great to meet Cyndi, Skip and Adam,

> and her wonderful mother Lola, Fritz from

> Goodshape, Crystal, Jann, Jen, Bill and his sister,

> Kent and Ann and so many others. I think talking to

> others and hearing testimonials during break and

> lunch was the best part.

>

> My best

> Aletha

> [low dose naltrexone] The Conference

>

>

>

> Dear list members - and especially Gigi,

>

> Attending the conference was an absolutely

> wonderful experience. I can't imagine the amount of

> work that must have gone in to putting it all

> together. We are so appreciative. While reports of

> trials, the physicians' private practice experiences

> and the very interesting input from the pharmacists

> (Skip Lenz and n Quinn) were gripping, it was

> particularly warming to put *faces* to some of those

> dear souls who have been working so hard to get the

> LDN word out.

>

> Before I share some of my notes (really spotty), I

> want to make a blanket apology to the dear members

> of this list who attended the conference. I am so

> sorry that we didn't get to meet most of you.

> (my husband, who has leukemia) has up days and some

> that are downish - fatigue that sometimes

> essentially forces him to lie down. While he

> started the day well, he was really forcing himself

> at the day wore on. We left as soon as the

> conference was over. As soon as we reached our

> room, he slept as if drugged. Gigi, I am

> particularly sorry we weren't able to stay and meet

> you properly. (

>

> Please remember that my notes are spotty.. I'm so

> relieved that there will be a DVD available soon.

> Some of this will be old hat to many of you, but

> and I are new

> to all of this, so I just kept writing as quickly

> as I could. OK, here we go.

>

>

************************************************************

> Gluck, MD - Emcee & Overview " The Year in

> LDN "

>

> He addresses the *generic

> drug/pharmaceutical/trial support* issue.

> 2007 is the tipping point. 6 to 7 trials

> occurring. Some trials occurring at NIH, Penn

> State, Mali, Milan (data to be compiled soon). Dr.

> MC Candless is treating autistic children with LDN.

>

> Endorphins are beneficial supporters of the immune

> system. A weak immune system can become confused

> and attack ones body.

>

> A conference re MS took place in Prague 1 week

> ago. A 6-month study of 40 persons. Treatment with

> LDN resulted in improved walking and ADL's. Safe

> treatment/minimal side effects. But need to know if

> endorphins rise as the disease process improves.

>

> LDN for Research Fund sponsors study, 80 subjects.

> Presentation to be after December. Results to be

> given to the Academy of Neurology.

>

> Study at Stanford, 40 persons, CFS/fibromyalgia,

> 21 week controlled trial, results to be presented

> July 1.

>

> Mind/Brain Consortium - MS, 16 week controlled

> study, 36 persons, re mental fog, psyco-active

> changes and symptoms.

>

> National MS Society has been an LDN-resistant

> group but is softening considerably as of late.

> Gave $44,000 to Penn State - animal study to

> determine the outcomes of high dose vs low dose.

> Encephalitis in rats - high dose makes worsens rats'

> conditions. Low dose improves rats' conditions. [i

> may have gotten the $ number wrong.]

>

>

***********************************************************

> I'm sure that I didn't record as accurately as I'd

> have liked. Please take my probable goofs in to

> account. Tomorrow I'll try to send off my notes of

> Jill , MD's presentation.

>

> Warm wishes,

>

> Jan

>

>

__________________________________________________