Re: SPF E-News May Special Edition

[Guest guest]

I am sure I will not be alone in requesting a copy of some of the

conferences. It will be too far for me to travel, but I would love

to hear about Stem Cell Research. If someone could tape it we would

have another way to raise money for research. I know it is not a

simple thing to do and I don't know the legalities of it, but I would

like a simple, plain VHS tape. Like I said, I will pay and anything

over cost can go to research.

Donna

> SPF Special Edition E-News: May 2004

>

> Welcome! The SPF E-News comes from the Spastic Paraplegia

Foundation, dedicated to the fight against HSP and PLS.

>

> EARLY-BIRD NOTICE ON THE 2004 TEAMWALK FOR OUR CURES AND NATIONAL

RESEARCH AND BEYOND CONFERENCE

>

> ==========================================================

> Save the Dates for this year's national event:

>

> - National Research & Beyond Conference and TeamWalk Weekend, Aug.

27-29, Boston area, MA!

> - Satellite TeamWalk in northern California, October 2!

> - Satellite TeamWalk in Toledo, Ohio - September - planning

underway!

> - Satellite TeamWalk in Tuckerman, AR - September - planning

underway!

>

> Or, plan to join our by Proxy program - see below!

>

> ==========================================================

> Dear Friends,

>

> Plans are underway for an exciting 2004 TeamWalk For Our Cures and

national Research and Beyond Conference. In this special edition E-

News, we are excited to share what's coming up so that you plan to be

a part of this year's effort.

>

> Our annual TeamWalk walkathon is our national event to raise funds

for Research Awards for Hereditary Spastic Paraplegia and Primary

Lateral Sclerosis. This year, in addition to our TeamWalk in

Massachusetts, we are expanding to hold Satellite TeamWalks in

California, Ohio and Arkansas. Remember, you can also participate

from your own home as a by Proxy, where someone else will do

your walking for you and carry your name and spirit in Massachusetts.

>

> The 2004 Research and Beyond Conference is part of the national

TeamWalk Weekend in Massachusetts. It will feature leading experts

and programs as well as a Friday Dinner Reception (see details

below).

>

> Scoop: This year's Grand Prize for the top TeamWalk fundraiser

( or by Proxy) is a Scooter!

>

> Registration for the Research and Beyond Conference and TeamWalks

will take place beginning in July. It can be done online or through

the mail. Please contact us if you'd like a TeamWalk packet mailed

to you.

>

> Here's what's in place for the TeamWalk Weekend in Massachusetts

(details on the Satellites pending):

>

> RESEARCH AND BEYOND CONFERENCE, Aug. 28, Four Points Burlington

(special $89 rate for travelers - call

>

> K. Fink, M.D., University of Michigan and Marchuk,

PhD., Duke University, recipients of the first SPF Research Awards,

will present " PLS - Finding the Causes and Cures " ; and " HSP - Finding

the Causes and Cures " . Thanks to your support in the 2002 TeamWalk,

Dr. Fink was awarded a $40,000 Grant for " A Molecular Genetic

Analysis of PLS " and Dr. Marchuk was awarded a $40,000 Grant for " A

Mouse Model of HSP " .

> ---

> Dr. Fink will also present " PLS and HSP - Similarities and

Differences " , featuring highlights from next month's scientific

conference where 40 researchers will work to establish universal

diagnostic criteria for PLS. Teepu Siddique, M.D., Northwestern

University, Conference Chairman, says, " Patients with PLS are

frequently incorrectly diagnosed as having Spastic Paraplegia and

vice versa. Not only is this unfortunate for patients, but it makes

it difficult to recruit patients for studies that have meaningful

results " . Note: Dr. Siddique will present conference highlights at

a Connection Conference June 26 in Chicago (there's also a Friday

Arrival Connection and lab tour). Registrations due: http://sp-

foundation.org/assets/pdf/symp-highlights.pdf

> ---

> Drs. Paola Arlotta and Bradley Molyneaux of Massachusetts General

Hospital and Harvard Medical School Center for Nervous System Repair

will present " Stem Cell Research and Regenerative Medicine " as

potential avenues to cure degenerative diseases.

> ---

> Terry Wise, J.D., public speaker and author, will present " Waking

Up: Climbing Through the Darkness " . Terry speaks about loss, grief,

recovery and hope as a result of personal traumatic experiences and

the loss at age 35 of her husband to ALS. Rabbi Kushner (Bad Things

Happen to Good People) did her book's Foreword. Visit

http://www.terrywise.com/

> ---

> ph inaitis, from the U.S. Food and Drug Administration,

will talk about the Clinical Trial Process for Drug Discovery.

>

> TEAMWALK FOR OUR CURES, August 29, Lexington, Massachusetts

>

> The TeamWalk will be in Lexington, known as the spot of the " shot

heard `round the world " , with many historical monuments and museums

nearby. Individuals will gather on the grounds of the Visitor's

Center. The TeamWalk route will be about two miles and people can

participate in as much or as little as desired. The gathering area

will have tables and chairs for non-s to enjoy the morning and

for all to celebrate after the TeamWalk.

>

> FRIDAY ARRIVAL RECEPTION DINNER, August 27

>

> A Friday Arrival Dinner will be held at the Sheraton. The evening

features special guest Elmer C. Bartels, Commissioner of the MA

Rehabilitation Commission. Mr. Bartels, a quadriplegic, has had a

distinguished career in rehabilitation, public service, and

disability advocacy. He'll share his personal story as well as a

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

>

> ==========================================================

>

> Please stay tuned for details regarding the 2004 Satellite

TeamWalks!

>

> ==========================================================

>

> TeamWalk Committees:

>

> MA TeamWalk Committee Chairman: Kathi Geisler

> Committee: Doug Brand, Jim and Thurza , Rita and

DiClemente, Ed Geisler, Maureen Hall, Ellen Kinsman, and Bobbie

Seidman, Bob and Marie Swain, Swain, Mark Weber

>

> California Satellite TeamWalk Chairmen: and Craig Gentner

> Ohio Satellite TeamWalk Chairman: Moria Franchetti

> Arkansas Satellite TeamWalk Chairman: Sue Huskey

>

> ==========================================================

> MAKE A DIFFERENCE

>

> The Spastic Paraplegia Foundation was formed in 2002 to establish a

foundation dedicated to finding the cures for Hereditary Spastic

Paraplegia and Primary Lateral Sclerosis and helping people seeking

information and support. It is managed and operated 100% by

volunteers.

>

> Our strength depends upon all of us.

> Volunteer: http://sp-foundation.org/how-to-help.htm

> Donate: http://www.sp-foundation.org/donate.htm

>

> Support research when you do your online shopping (no cost to you)

> http://sp-foundation.org/shopping.htm

>

>

>

>

> --

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