SPF E-News: Jan. 2003

[Guest guest]

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

dedicated to the fight against Primary Lateral Sclerosis and

Hereditary Spastic Paraparesis. See: http://www.sp-foundation.org

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= CONFERENCES AND OTHER EVENTS ==

Hear from experts and meet others. See http://sp-foundation.org/events.htm

--January 18, Columbus OH, Conference featuring Dr. K. Fink:

" Understanding HSP and PLS " . Deadline January 10:

http://sp-foundation.org/pdf/OHIO%20Conference.pdf

--February 2, Ft. Lauderdale FL, Patient Connections Luncheon

--February 15, Vancouver Canada, Conference featuring Dr. Siann

Spacey

--March 3, Atlanta GA, Patient Connections Coffee

--March TBD, Boston MA area, Conference

--April 4-5, Berkley Springs WV, Spring Fling Weekend

--April 12, Chicago IL, Conference

--April 12, Edison NJ, Patient Connections Lunch/outing to the

annual Abilities Expo

Monthly Support Groups:

---Norristown, PA (north of Philadelphia)

--Ann Arbor, MI

= ANNOUNCING MONDAY ONLINE CHAT SESSIONS ==

Beginning January 13 on Mondays from 5:00 - 6:30 p.m. EST and

8:00 - 9:30 p.m. EST. You must belong to the HSP-PLS-Chat Group

through Yahoo Groups. Join:

http://login.yahoo.com/config/login?.intl=us & .src=ygrp & .done=http://groups.yahoo\

..com%2Fgroup%2FHSP-PLS-Chat%2Fjoin

= NEW CENTER BRINGS HOPE ==

Stanford University Medical Center launches Stem Cell Biology

Institute to develop treatments for cancer and neurodegenerative

disorders.

http://mednews.stanford.edu/news_releases_html/2002/decreleases/stem-cell-instit\

ute.html

= STUDY SEEKS PLS PATIENTS ==

Columbia-Presbyterian Medical Center in New York seeks PLS patients

for study to help differentiate diagnosis between PLS, ALS and

PMS. Uses magnetic resonance spectroscopy. Email bmd9@...

or call

= DAILY LIVING TIPS ==

** Recommended Articles:

-On Modified Vans: http://www.mdausa.org/publications/Quest/q85vans.cfm

-On Canes/Crutches: http://physicaltherapy.about.com/library/weekly/aa122699.htm

** Patient Recommended Videos:

-Educated Caregiver Video Series. Provides information, strategies

and support.

http://www.dynamic-living.com/educated_caregiver.htm

-Exercise for People with Limited Mobility.

http://www.demosmedpub.com/book125.html

= ADVOCACY ==

New EEOC study shows that charges of disability bias are the

second fastest growing type of on-the-job discrimination in the

nation after age discrimination

http://www.adaptiveenvironments.org/neada/job_bias.php

**GET INVOLVED AND HELP MAKE A DIFFERENCE:

The SPF is a new, volunteer driven, community organization.

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

= INFORMATION ON HSP AND PLS ==

Summary Chart: http://sp-foundation.org/HSPPLS_Chart.htm

Websites:

HSP: http://www.HSPinfo.org (lay site), http://www.geneclinics.org

PLS: http://www.geocities.com/freyerse/index.html (lay site)

Daily Email support group: http://sp-foundation.org/hspl.htm

SPF Vision: The day where all individuals with HSP and PLS are

diagnosed, treated, and cured

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