RE: Let's cool our jets.

[Guest guest]

Bravo Doug!!! Mark was the first PLSer I ever met. We had agreed to

meet and have lunch at a local restaurant. I was so nervous to meet

this " attorney " and I was just a " grandma from NH " , I felt like a duck

out of water. But I was so wrong. I was very very comfortable with

him, we talked and talked and ate and ate, and I truly felt a friendship

developed (right Mark?). He is a great guy, tireless to the cause,

(good looking also). I can't imagine what all this is about. I missed

something along the way . Could somebody enlighten me?

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

It's better to have Laugh Wrinkles than Worry Warts!

[Guest guest]

AMEN, Doug

Gene Secor

[Guest guest]

Hi Doug,

I don't know what this is all about but I am definitely blessed because of

Mark's ingenious idea to start this group and the support of so many others who

have come along side him to help his vision grow and give us an opportunity to

share our experiences and hopefully find the cure. I am very grateful. Thank

you Mark and others for everything. Thank you Doug for reminding us what this

is really all about. Take care.

God Bless

Yolanda

Let's cool our jets.

Many years ago when Flora was first diagnosed, I spent countless hours

launching emails into cyber-space hoping to connect with someone who knew

about this anomaly called Primary Lateral Sclerosis. After what seemed an

eternity, my first reply came from a young attorney named Mark Weber. A

faceless soul who had to put a promising career on hold to deal with the

challenges

we have all come to know too well. I've never met Mark, although we've

shared phone calls and emails since the beginning. From the very start he

had a vision that eventually became reality.

Establish a forum where PLS patients and supporters could reach out to

share experience, strength and hope with each other. At first blush...a

simple concept. Yet in reality it required an

enormous amount of work and coordination to bring it to fruition.

Eventually, more and more people began to surface and the rest is history.

As it began to grow legs, Mark was joined by a

handful of other dedicated individuals to help raise the bar. It was time

to step it up by acquiring funds to back research specifically focused on

finding a cure for PLS and HSP. The effort and energy

needed to launch that enterprise would have caused me to throw in the towel

early in the process. Yet they stayed with it and continue to do so today.

Their common goal is the cure...their common

solution is UNITY.

I've heard some rumbling recently. Folks taking shots at each other over

where and how much of the research dollars should be allocated to benefit

one condition or the other. That saddens me

but comes as no surprise. I sensed this childish behavior would eventually

rear its ugly head and appears to have arrived right on cue. What a

shame. What an insult to Mark and the others

who have done so much for so many. We are familiar with the " domino

effect " . A process whereby a single action initiates a chain reaction.

Very simply, this defines the essence of medical

research. Isolating or identifying a gene or some cell-gizmo can likely

lead to discoveries that will unlock mysteries that cloak a wide variety

of conditions. That takes time, money, patience,

dedication and a singleness of focus called UNITY.

Lock arms not horns. Unify our direction, thoughts and prayers for the

common cure. Back and support those who lead the charge and be grateful

they are willing to do it. Have faith in their efforts and trust their

intentions. We will all benefit beyond our wildest dreams. Mark and

Company are heroes in my book. They deserve to be recognized for their

accomplishments. Engaging in a war of

words over " who should get what " has no place in the PLS/HSP community. I,

for one will have no part of it...and I ask you to join me.

This is just the word according to Doug, so take it for what it's worth.

Have a good day. Be good to yourself and others...Doug/St. sburg, FL

[Guest guest]

I too am very greatful to Mark and everyone, before I found this group I felt

lost and very confused. None of my doctors including my Neurologist no anything

about PLS.If it wasnt for the specialist I went too, I probably would have never

known what was going on. Since my doctors dont know much I really lean on this

group for ansewers, and information. It is nice to know there are people that

know exactly how I feel. I am very sorry we have PLS, but am very happy to have

this new found family.

Thank you again and God bless. Sandy

Let's cool our jets.

Many years ago when Flora was first diagnosed, I spent countless hours

launching emails into cyber-space hoping to connect with someone who knew

about this anomaly called Primary Lateral Sclerosis. After what seemed an

eternity, my first reply came from a young attorney named Mark Weber. A

faceless soul who had to put a promising career on hold to deal with the

challenges

we have all come to know too well. I've never met Mark, although we've

shared phone calls and emails since the beginning. From the very start he

had a vision that eventually became reality.

Establish a forum where PLS patients and supporters could reach out to

share experience, strength and hope with each other. At first blush...a

simple concept. Yet in reality it required an

enormous amount of work and coordination to bring it to fruition.

Eventually, more and more people began to surface and the rest is history.

As it began to grow legs, Mark was joined by a

handful of other dedicated individuals to help raise the bar. It was time

to step it up by acquiring funds to back research specifically focused on

finding a cure for PLS and HSP. The effort and energy

needed to launch that enterprise would have caused me to throw in the towel

early in the process. Yet they stayed with it and continue to do so today.

Their common goal is the cure...their common

solution is UNITY.

I've heard some rumbling recently. Folks taking shots at each other over

where and how much of the research dollars should be allocated to benefit

one condition or the other. That saddens me

but comes as no surprise. I sensed this childish behavior would eventually

rear its ugly head and appears to have arrived right on cue. What a

shame. What an insult to Mark and the others

who have done so much for so many. We are familiar with the " domino

effect " . A process whereby a single action initiates a chain reaction.

Very simply, this defines the essence of medical

research. Isolating or identifying a gene or some cell-gizmo can likely

lead to discoveries that will unlock mysteries that cloak a wide variety

of conditions. That takes time, money, patience,

dedication and a singleness of focus called UNITY.

Lock arms not horns. Unify our direction, thoughts and prayers for the

common cure. Back and support those who lead the charge and be grateful

they are willing to do it. Have faith in their efforts and trust their

intentions. We will all benefit beyond our wildest dreams. Mark and

Company are heroes in my book. They deserve to be recognized for their

accomplishments. Engaging in a war of

words over " who should get what " has no place in the PLS/HSP community. I,

for one will have no part of it...and I ask you to join me.

This is just the word according to Doug, so take it for what it's worth.

Have a good day. Be good to yourself and others...Doug/St. sburg, FL