|
 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.
2008 SPF National Conference -
Philadelphia
Where: Crowne Plaza in Valley Forge, PA
When: June 6-7, 2008
Come join us and hear from leading experts about cutting
edge research and meet others dealing with similar
challenges. There will be an arrival dinner gathering on
Friday, June 6. Go to
National Conference
for more details.
Support Group -
Fishkill, NY; every Second Saturday - May 10, 2008
Debbie Berish started 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.
CT Connection Meeting;
Hartford, CT; June 4, 2008
There will be a meeting of the CT Connection at the
N.E.A.T. Marketplace in Hartford, CT on Wednesday, June
4. The doors will open at 9:30 AM and an arrival coffee
hour will be served. For those who haven't ever been there,
check it out on the web at
www.neatmarketplace.org. It is a wonderful
place full of resources, equipment, computer lab,
lending library, etc. It is located convenient to routes
91 and 84; the facilities are very accessible.
Michael Webster, a Newington policeman, will speak to us
about personal as well as home safety and
security. A N.E.A.T. staff person will then give a
virtual tour of the facility and present helpful
adaptive gadgets. Lunch and conversation will follow.
Our afternoon speaker is one of our own PLSers,
Professor Mira Binford, a Holocaust survivor and
internationally recognized for her Holocaust
documentary; she will present that documentary. The
documentary, "Diamonds in the Snow", shows the stories
of three very young children, including Mira, who were
saved from the Nazis by Polish strangers.
There will be plenty of time to socialize as well as
shop in the N.E.A.T. store for an assortment of adaptive
aides and equipment. They accept cash, personal checks,
and credit cards. The fee of $20 includes coffee hour,
lunch, and handouts.
If you would like to attend, please send an email to
Dolores Carron
and she will forward the registration form as well as
directions to the meeting site to you.
Kentucky Connection Meeting; July
21, 2008
The first Kentucky Connection will be held at the Majestic
Restaurant (270-247-2541), 700 South 6th Street, in
Mayfield, Kentucky on Monday, July 21. The meeting
will start at 12:30pm. We hope that you will
attend because this is a opportunity to meet people like
yourself. We would like to show you how to arrange a
Connection meeting for all of you to attend. Hosting a
Connection meeting is something you will be glad that
you have done. This will also help bring in donations
for a cure.
If you plan to attend, please write to
Jane Anne King
and let her know how many will attend. The deadline for
the registration will be June 27th.
Warm Springs Retreat - Warm
Springs, GA; Aug 8-10, 2008
I Live, I Learn, & I Achieve
The first Warm Springs Retreat will be held on Aug 8-10 at
the
Roosevelt Warm Springs Institute for Rehabilitation.
The Institute is a state-operated comprehensive
rehabilitation center located in Warm Springs, Georgia
on a beautiful 950 acre campus. Begun by President
Franklin D. Roosevelt in 1927 to treat persons affected
by polio, the Institute still remains true to its
original mission today "to empower individuals with
disabilities to achieve personal independence" as a
living legacy to FDR. In addition to its continuum of
rehabilitation services, the Institute also offers the
fully-accessible
Camp Dream,
which is enjoyed by 2,000 disabled campers each year.
Cabins for two are available for $30/person per night
and come with a handicap accessible bathroom. Breakfast
will be about $6.00 a person and Lunch $12.00 per
person. The group will go out for dinner on Saturday
night for some of that scrumptious Southern cooked food
(self-pay). Much more planned but all is FREE.
Please contact
Jane Anne King
if you plan to attend.
Abilities Expo
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.
-
Southern CA - May 30-June 1,
2008
-
Minnesota - September 12-14,
2008
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
May 13 (Stroke Focus)
June 10
July 8
August 12 (Multiple Sclerosis)
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
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
Garden Grove, CA (near LA)
- Monthly Support Group Meeting
Ataxia monthly Support Group Meeting.
Third Saturday of each month. Organized by Kay Bell
(who had HSP), who sadly passed away last year. Contact
malind@cox.net, an
SPF Board Member in that area.
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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