getting there - new updates!

[Guest guest]

Hi all,

This morning I added the Austin Connection event and the NY Spasticity

Conference event to the Connections website (sorry Bob, it took a while). Next

I

need to work on the photos for the Austin Learn to Windsurf Day (we raised

almost $1,000 for Research, thanks to 's efforts).

http://sp-foundation.org/connections.htm

We had a lovely Austin Casual Connection at Marie Callendar's! I was happy

to be there and meet some of our Texans. There were four HSPers and 2 PLSers

plus several spouses and other family members. One PLSer was attending a

gathering for the first time so he was really happy to be there and be part of

the

group. brought lots of handout materials so everyone picked up

whatever they needed. The next Austin Connection is September 11.

Bob did a fabulous job organizing the NY Connection Conference on May 1,

which featured two leading neurologists speaking about spasticity as well as a

program on the Technique and a Baclofen Pump Round Table. There were

around 40 people in attendance so there were lots of photos. I picked a

sampling to share for the website. They are thumbnails, so be sure to click

them so

you can see a larger image. Due to privacy issues, we cannot name all the

individuals in all the photos (sorry). Thanks to Bebe, Bernice, Floyd and

for helped out on this one.

Upcoming..................

is ensconced with the Chicago Connection event coming up shortly. Dr.

Siddique will present highlights from the PLS Diagnostic Symposium and

hopefully it will help clarify the boundaries between PLS, HSP and ALS as there

is

significant cross-over diagnosis. There's a lab tour and Friday Arrival Dinner.

The registration deadline has passed, so contact us asap if you want to

attend.

All hands are on deck in my area organizing the Research and Beyond

Conference on August 29 in the Boston, MA area. We are honored that Dr. Fink

and Dr.

Marchuck, the experts who were awarded our first two Research Awards ($40,000

each, to PLS Research and HSP Research, thanks to all our efforts) are each

flying in to present programs on cutting edge HSP research and PLS research.

Dr.

Fink will also present highlights from the PLS Diagnostic Symposium to help

us understand the differences between PLS and HSP, so don't worry if you can't

get to Chicago. We also have two Stem Cell experts to talk about exciting and

promising developments there, as well as a motivational speaker and book

author - a woman whose husband died from ALS. And, we also have the

Massachusetts

Commissioner on Disability - he's a quadraplegic with a distinguished career

in disability issues. Whew!

The day after the Conference is the MA TeamWalk!!! We have a Banquet Dinner

after the Conference. Oh ya, and there's a Friday Arrival Dinner to launch

the weekend.

Remember that Connections and Walkathons will also be held on September 18 in

Toldeo Ohio and in Tuckerman Arkansas. Our finale Walkathon and Connection

will be October 2 in the San Francisco area and I'll be there. We'll announce

our TeamWalk Grand Prize winners and the Raffle Winner for the Scooter then.

Oops, I almost forgot. We have a Causual Connection Lunch in Phoenix Arizona

on July 17. Write me back asap if you want to attend, as we need to reserve

a table.

Gee, a lot is cookin'!

best,

Kathi

Spastic Paraplegia Foundation, Inc.

www.sp-foundation.org

" Hope is like a road in the country; there wasn’t ever a road, but when many

people walk on it, the road comes into existence. "

- Lin Yutang