Re: Contributing to the cause, awareness, ect...

[Guest guest]

*Hi,*

*

*

*And welcome to the group. My name is Catrina and I am the grandmother

of Brie, 10 months old, diagnosed with bilateral perisylvian PMG and

hypotonic cerebral palsy. **We share some common interests in both loving

children with PMG as well as a desire to help others through this mire of

technical and medical jargon and to find a common place of support and

resources. *

*

*

*I'm not sure if you are aware of our organization or not. But we have a

nonprofit organization called PMG Awareness Organization, Inc. Our website

is www.pmgawareness.org. We started our website in February and the

response has been phenomenal. Since then we have been incorporated in the

state of Florida, have filed our federal nonprofit paperwork as a 501c3

organization with the IRS, and developed an international following on the

internet. **It's been a crazy beginning and our Board has been very busy

behind the scenes getting ready to roll out new programs this summer and

fall. *

*

*

*This is a much needed resource and we are wholly in support of finding

others who are interested in helping and supporting the families of PMG,

regardless of whether that comes from our organization, or from others. So,

I am not sure if you would be interested in working with PMG Awareness, or

if you are interested in starting your own venture. Whatever your desires

are, I wanted to say hello and to let you know that we exist and would love

to work with you, if you have such an interest. *

*

*

*Please feel free to check out our website. There is a wealth of

information and resources there as well as the first family survey, as far

as I am aware. Our medical advisory board, myself, and our Board are

working to get the information extrapolated and put into an abstract that

we hope to present at the world genetics conference in November. If you

haven't been able to take advantage of the survey, we surely hope you will

do so. The information gathered there will help to make the needs of our

families known. Also, our IT director is working on a new website that I

think will be much more user friendly and hopefully will be up in the next

few weeks. *

*

*

*Please let me know if you have an interest in our group or if we can help

in any way. We truly believe that working together, we can unlock the

mysteries of PMG.*

*

*

*With Appreciation,*

*

*

*Catrina Byrge, R.N. (and Brie's Gram)*

*CEO*

*PMG Awareness Organization, Inc.*

*www.pmgawareness.org*

*catrina@...*

[Guest guest]

Catrina, thank you so much. I am very much interested in working with you.

Perhaps I could email you about this some more?

>

> *Hi,*

> *

> *

> *And welcome to the group. My name is Catrina and I am the grandmother

> of Brie, 10 months old, diagnosed with bilateral perisylvian PMG and

> hypotonic cerebral palsy. **We share some common interests in both loving

> children with PMG as well as a desire to help others through this mire of

> technical and medical jargon and to find a common place of support and

> resources. *

> *

> *

> *I'm not sure if you are aware of our organization or not. But we have a

> nonprofit organization called PMG Awareness Organization, Inc. Our website

> is www.pmgawareness.org. We started our website in February and the

> response has been phenomenal. Since then we have been incorporated in the

> state of Florida, have filed our federal nonprofit paperwork as a 501c3

> organization with the IRS, and developed an international following on the

> internet. **It's been a crazy beginning and our Board has been very busy

> behind the scenes getting ready to roll out new programs this summer and

> fall. *

> *

> *

> *This is a much needed resource and we are wholly in support of finding

> others who are interested in helping and supporting the families of PMG,

> regardless of whether that comes from our organization, or from others. So,

> I am not sure if you would be interested in working with PMG Awareness, or

> if you are interested in starting your own venture. Whatever your desires

> are, I wanted to say hello and to let you know that we exist and would love

> to work with you, if you have such an interest. *

> *

> *

> *Please feel free to check out our website. There is a wealth of

> information and resources there as well as the first family survey, as far

> as I am aware. Our medical advisory board, myself, and our Board are

> working to get the information extrapolated and put into an abstract that

> we hope to present at the world genetics conference in November. If you

> haven't been able to take advantage of the survey, we surely hope you will

> do so. The information gathered there will help to make the needs of our

> families known. Also, our IT director is working on a new website that I

> think will be much more user friendly and hopefully will be up in the next

> few weeks. *

> *

> *

> *Please let me know if you have an interest in our group or if we can help

> in any way. We truly believe that working together, we can unlock the

> mysteries of PMG.*

> *

> *

> *With Appreciation,*

> *

> *

> *Catrina Byrge, R.N. (and Brie's Gram)*

> *CEO*

> *PMG Awareness Organization, Inc.*

> *www.pmgawareness.org*

> *catrina@...*

>

>

>

[Guest guest]

Absolutely! We would love to have your assistance My email is

catrina@....

I'm looking forward to hearing from you.

Sent from my iPhone

> Catrina, thank you so much. I am very much interested in working with you.

Perhaps I could email you about this some more?

>

>

> >

> > *Hi,*

> > *

> > *

> > *And welcome to the group. My name is Catrina and I am the grandmother

> > of Brie, 10 months old, diagnosed with bilateral perisylvian PMG and

> > hypotonic cerebral palsy. **We share some common interests in both loving

> > children with PMG as well as a desire to help others through this mire of

> > technical and medical jargon and to find a common place of support and

> > resources. *

> > *

> > *

> > *I'm not sure if you are aware of our organization or not. But we have a

> > nonprofit organization called PMG Awareness Organization, Inc. Our website

> > is www.pmgawareness.org. We started our website in February and the

> > response has been phenomenal. Since then we have been incorporated in the

> > state of Florida, have filed our federal nonprofit paperwork as a 501c3

> > organization with the IRS, and developed an international following on the

> > internet. **It's been a crazy beginning and our Board has been very busy

> > behind the scenes getting ready to roll out new programs this summer and

> > fall. *

> > *

> > *

> > *This is a much needed resource and we are wholly in support of finding

> > others who are interested in helping and supporting the families of PMG,

> > regardless of whether that comes from our organization, or from others. So,

> > I am not sure if you would be interested in working with PMG Awareness, or

> > if you are interested in starting your own venture. Whatever your desires

> > are, I wanted to say hello and to let you know that we exist and would love

> > to work with you, if you have such an interest. *

> > *

> > *

> > *Please feel free to check out our website. There is a wealth of

> > information and resources there as well as the first family survey, as far

> > as I am aware. Our medical advisory board, myself, and our Board are

> > working to get the information extrapolated and put into an abstract that

> > we hope to present at the world genetics conference in November. If you

> > haven't been able to take advantage of the survey, we surely hope you will

> > do so. The information gathered there will help to make the needs of our

> > families known. Also, our IT director is working on a new website that I

> > think will be much more user friendly and hopefully will be up in the next

> > few weeks. *

> > *

> > *

> > *Please let me know if you have an interest in our group or if we can help

> > in any way. We truly believe that working together, we can unlock the

> > mysteries of PMG.*

> > *

> > *

> > *With Appreciation,*

> > *

> > *

> > *Catrina Byrge, R.N. (and Brie's Gram)*

> > *CEO*

> > *PMG Awareness Organization, Inc.*

> > *www.pmgawareness.org*

> > *catrina@...*

> >

> >

> >