nat'l conf: hotel deadline August 11

[Guest guest]

Hi group,

I spoke to our contact at the Four Points Burlington (MA) hotel regarding our

block of rooms for the August 28 Research and Beyond Conference and August 29

TeamWalk because some people were having questions.

The Conference features the researchers who were awarded the first SPF

Research Awards - Dr. Fink and Dr. Marchuk - who will talk about

their

PLS and HSP research. Dr. Fink will also talk about the recent PLS Consensus

Symposium (to differentiate PLS-HSP-ALS). There are also two Harvard

researchers to talk about stem cell research and other programs.

There are still some handicapped accessible rooms left, but only King size

rooms (with king-sized bed), no doubles. Our room block is being held until

August 11 and then goes back to general booking. Rooms are starting to get

scarce.

So, if you are attending and need a room, I suggest getting your room in

place as well as registering for the weekend events so the committee can do its

work in planning.

You can come to any combination of the Friday Dinner featuring MA

Disabilities Commissioner (he's quadraplegic), the Research and Beyond

Conference on

Saturday and the Sunday TeamWalk For Our Cures. (Remember we have Connections

and

TeamWalks in Ohio, Arkansas and CA and we also have the honorary by

Proxy program so everyone can help raise funds for research). The

TeamWalk/Conference website is: http://sp-foundation.org/Teamwalk04/TWHome.htm

and

everything is online.

I've included the Conference agenda below.

best,

Kathi

CONFERENCE REMINDER ANNOUNCEMENT

The 2004 National Research and Beyond Conference will be on Saturday, August

28 in Burlington, Massachusetts (just north of Boston) featuring

world-renowned researchers working on PLS and HSP, stem cell experts and other

special

programs.

It will be held at the Four Points Sheraton Burlington: 30 Wheeler Road,

Burlington, MA 01803. Phone: .

There's also a special Arrival Reception and Dinner at the hotel on Friday,

August 27 at 5:30 p.m. Sign-in, collect materials, meet and chat with others,

enjoy dinner and a fabulous program featuring Special Guest Elmer Bartels.

Mr. Bartels, a quadriplegic, has had a distinguished career in rehabilitation,

public service, and disability advocacy. He'll share his amazing story as well

as a program on " Living Independently and Housing and Home Modifications " .

____________________________________________________________

CONFERENCE AGENDA:

A Coffee Arrival begins at 9:00 a.m. to sign-in, collect materials, visit the

vendor tables, mingle and enjoy coffee and breakfast breads. The Conference

will begin at 10:00 a.m.

We are honored to present the investigators who received the first two SPF

Research Awards:

K. Fink, M.D., University of Michigan and SPF Research Award recipient:

" PLS - Finding the Causes and Cures " and " PLS and HSP - Similarities and

Differences "

-and-

Marchuk, PhD., Duke University and SPF Research Award recipient: " HSP

- Finding the Causes and Cures "

Other experts include:

Drs. Paola Arlotta and Bradley Molyneaux, MA General Hospital and Harvard

Medical School Center for Nervous System Repair: " Promises of Stem Cell Research

and Regenerative Medicine "

Other programs are:

Terry Wise, J.D., motivational speaker and author: " Waking Up: Climbing

Through the Darkness "

A Time For Us: Special break-out sessions for patients and loved ones to sh

are with one another

__________________________________________________________

Register online here:

http://sp-foundation.org/Teamwalk04/TWHome.htm

__________________________________________________________

The 2004 TeamWalk For Our Cures launches on Sunday, August 29 in Lexington,

Massachusetts. We hope you'll all join this annual effort to speed our cures

and walk or roll or just enjoy the morning with us.

[Guest guest]

In a message dated 7/16/2004 11:21:09 AM Eastern Daylight Time,

momofboysonly@... writes:

> I only walked a short distance

> last year because we have so far to travel home, I won't wear myself out

> that much...and my husband and my oldest son walked the rest of the way

> for me and my youngest helped me back to the tents and took care of me--I

> am such a lucky gal!

Sue Me and all coming to join us,

We had a committee meeting last weekend and have set up the TeamWalk routing

for this year.

We'll have 2 routes that start out together, but one is a short-cut back.

The short-cut is 1/2 mile and the long route is 1 mile. People can do 1/2 mile,

1 mile, 1 1/2 mile, or 2 miles (do the 1-mile route twice).

Hey, maybe we should make badges of completion for the various distances!

And we can have badges for the TeamWalk Ralliers who stay under the tent and

welcome people back! That's a big job, too!

best

Kathi