|
 Unless otherwise noted, contact
information@sp-foundation.org for
details. visit
Connections to see some summaries of events
held this year.
Please consider helping us organize a gathering in your area! Our Casual
Connections are as easy as meeting for coffee or lunch. This offers
opportunities to meet others, share knowledge, strategies, ideas, support,
understanding, concerns, issues, solutions, research updates, tears, smiles and
laughter.
Support Group -
Fishkill, NY; every Second Saturday - September 13, 2008
Debbie Berish formed a HSP &
PLS Support Group in FishKill, NY. The group meets once
a month on the second Saturday from 1-2:30pm at Our
Savior Lutheran Church (directions
to the church).
This support group is essentially peer-run, it is led by
others with similar disabilities. The focus is on
self-help, with the idea that all of us together know
more than any one of us individually. This support group
will provide a forum for mutual acceptance,
understanding, and self-discovery. It offers an
opportunity to reach out to others and benefit from the
experience of those who have "been there". It also
reminds ourselves that we are not alone. Please contact
Debbie if you plan to attend.
Note: Debbie also hosts the SPF Chat line on Mondays
from 8-9pm EST.
Oklahoma HSP/PLS
Support Group Meeting - Bartlesville, OK; September 27, 2008
Darrell Owens is beginning a HSP &
PLS Support Group in Bartlesville, OK. The first meeting
will be held Saturday, September 27 at the
Jane Phillips Medical Center in Bartlesville, first
floor classroom from 2 - 4pm. The address is 3500 East
Frank Phillips Boulevard.
Please contact
Darrell
if you plan to attend.
Idaho HSP/PLS
Support Group Meeting - Boise, ID; October 4, 2008
There will be a HSP/PLS Support Meeting for Idaho on
October 4, 2008 at noon at Elks Rehab Hospital in
downtown Boise. Dr. Robert Friedman will speak and
answer questions and a representative from Medtronic
will also participate in the meeting.
Please contact
Pat Bernhard (208-888-4069) by September 30 if you plan
to attend.
Autumn in
Carolina - Rural Hall, NC; October 17-18, 2008
Plan
to attend the 7th Annual Autumn in Carolina and SAWCAR
Race on Saturday, October 18, 2008 in
Rural Hall, NC.
A Friday night dinner is planned and a hospitality suite
is booked at the Holiday Inn Select for Friday evening.
Autumn in Carolina will be held in the Fellowship Hall
of Kingswood United Methodist Church on Saturday. The
program is being developed. Weather permitting, the
SAWCAR (Scooter and Wheel Chair Association of Racing)
races will be held on Saturday. Racers should start
planning strategy and remember that it takes lots of
expensive technology to maintain those racing machines,
so sponsors are needed. All sponsor donations will go to
the SP Foundation and ultimately to PLS and HSP
research. Everyone is invited to share a meal at another
nearby restaurant Saturday evening.
With the current fuel situation, there is no telling how
much a gallon of gas will cost by October. Those from
North Carolina should register with the ALS Association
and apply for a vacation grant, which can be as much as
$250.
Discounted rooms ($85/night) are available at The
Holiday Inn Select. Call 1-800-553-9595 and ask for a
room in the Autumn in Carolina block. Rooms in this
block will be held until midnight on September 18. Other
motels in the area include: Super 8 Motel,
1-800-800-8000; Quality Inn, 1-336-767-9009; Days Inn,
1-336-744-5755; Motel 6, 1-336-1588.
If
you are planning to attend, please contact
Don Wilson:
don-wilson@earthlink.net or 336-969-6748.
RGM Golf Classic - Queenstown
Harbor, MD November 8, 2008
The 6th Annual RGM Golf Classic will be at Queenstown
Harbor (River course) on Saturday, November 8, 2008.
This Year's Golf Tournament Highlights Include: Coffee
and Donuts at Registration, Complimentary Bloody Mary
Bar, Practice Facility, Free Beer and Beverages all Day,
Contests, Lunch Served on the Course (including Oysters
and
Chili/Chowder), Silent & Live Auctions, 50/50 Raffle,
Door Prizes, Dinner and lots of fun.
Brochure
For more information and to register online, click
here.
Abilities and Independence Expos
Abilities
Expo showcases the latest products and services to
enhance the lives of people with disabilities. The
exhibit hall is packed with vendors, live equipment
demonstrations, and special events throughout the
weekend.
Independence
Expo will be held at the Gaylord Palms Resort &
Convention Center in Orlando, FL on August 9-10, 2008.
Over 100 vendors will display life-enhancing products
and services along with 10 informative workshops.
Movement for Living free
Teleconferences and Seminars
present information on spasticity management
Medtronic's
Movement for Living Seminars feature information about the Baclofen Pump.
The seminars are designed to educate people about severe
spasticity and ITB Therapy (Intrathecal Baclofen
Therapy) as a treatment option. During the two-hour
seminar, you will hear from an experienced physician who
manages spasticity and a Movement for Living Ambassador
who is receiving treatment for his or her spasticity.
The 2008 teleconferences are listed below.
Register:
https://www.medtroniceducation.com/kma/www/itb_mfl/3.listing.html
or call 1-888-743-8348
2008
Teleconferences - 7:00 p.m. EST
September 9
October 14 (Pediatric Focus)
November 11
For information on the Baclofen Pump, visit the Journal
of Neuroscience Nursing, April 2006 article to read "Intrathecal
Baclofen Therapy: Ten Steps Toward Best Practice"
www.medscape.com/viewarticle/547425
Wheelchair
Tennis Clinic - Hopewell Junction, NY
Free Wheelchair Tennis Clinics for
Adults and Juniors, free racquet is included. Click
here for more
info.
Support Groups organized by related organizations and
where SPF community members are involved
Nashville, TN
MDA monthly
Support Group meeting. First Tuesday of the
month. Contact Steve at
stevekellarcope@yahoo.com (a member of SPF who
participates in the group)
Bangor, ME
AlphaOne bi-monthly Support group meeting for people
with spinal cord injuries and diseases. Contact Wes Smith at 1-800-300-6016.
Ann Arbor, MI
University of Michigan monthly Support Group meeting
for people with HSP or PLS and other neurological
conditions.
Second Friday of the month. Contact
jmathay@umich.edu,
former nurse of John K. Fink, M.D., leading researcher
of HSP and PLS.
Norristown, PA (near
Philadelphia)
Ataxia monthly Support Group meeting.
2nd Saturday of the month,
Mercy Suburban General Hospital. Organized by Liz
Nussear, an SPF member. Contact
lizout@aol.com
Charlotte, North Carolina
- Quarterly Support Group Meeting
Ataxia quarterly Support Group meeting. December, March,
June and September. Co-chaired by Cece Russell, a member
of the SPF. Contact
cecerussell@HOTMAIL.COM
Note:
Local chapters of the
MDA,
ALS Association,
National Multiple
Sclerosis Society ,National
Spinal Cord Injury Association,
United Cerebral Palsy and
Ataxia Foundation
often allow members of our community to attend their
support groups. Please consider contacting them and let
us know if you join one so we can add that group to the
above list.
Areas where SPF volunteers
hold meetings annually or semi-annually:
Northern California: Contact
Linda
Gentner
Colorado:
Contact
Dale
Rutschow
Connecticut:
Contact
Dolores Carron
Florida:
Contact
Kathi Geisler
Idaho:
Contact
pbernhard@ureach.com
Massachusetts:
Contact
Kathi Geisler
Oklahoma: Contact Mark Dvorak at
czechmarkmhd@yahoo.com
Texas:
Contact
Marlene Doolen
West Virginia:
Contact
Ronnie Grove
Vancouver, British Columbia, Canada:
Contact
Jean Chambers
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