Re: Any PLSers or HSPers living in PA

[Guest guest]

Check our database

_http://www.geocities.com/freyerse/plspals_usa1B.html#PA_

(http://www.geocities.com/freyerse/plspals_usa1B.html#PA)

[Guest guest]

Connie,

My name is Sue and I live in western PA, two hours south of Erie and

two hours north of Pittsburgh to give you an idea.

Where are you located?

I am 39 married almost 20 years and have two teenage sons, ages 16

and 13, the lights of my life.

I have had HSP for 12 or more years.

Hope to hear back form you!

Sue Me>

I would like to hear from others in PA who also have this disease. I

> get quite frustrated often and would like to find out how others

> here feel and what they are doing in their lives. I am married

and

> have a 21 year old daughter.

[Guest guest]

In a message dated 6/11/2004 11:35:31 PM Eastern Daylight Time,

PLS-FRIENDS writes:

> I would like to hear from others in PA who also have this disease.

Hi Connie,

We have a lot of people in our community in PA. Many of the PLSers are on

the PLS database that set up so you can look there for names. The HSP

group hasn't had such a database although some have listed their names there

since expanded it to include HSP last year. I don't know if Sue Me listed

herself there, but she's in PA.

If you're interested, Liz runs a monthly support group that was originally

started through the Ataxia Foundation. Her early diagnosis was Ataxia but it

was later changed to HSP. Ataxia is a related neurodegenerative disease. Liz's

group is open to anyone with a neuro disease and she has PLSers and HSPers

who come. It is held in a hospital in a town in the Philly area. If you're

interested, you can email her here: Lizout@....

Some of the other states where we have a lot of people are Ohio, Georgia,

Florida, Michigan, Texas, NY and California. I'm really glad we have a TeamWalk

and Connection in Ohio and California this year as well as MA so that more of

us can walk this walk together.

best,

Kathi