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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.
Connections
The 2010 Russ Dellen Memorial Loop for Life has been scheduled for August 21,
2010. Once again, over 3,000 riders will be escorted by the Indianapolis
Metropolitan Police Department on I-465, closing all three lanes of traffic for
the ride. Registration for the ride includes:
Free Breakfast & Lunch
Vendor Midway
Cool Prizes
Bike Show
Live Music
Special Guests
In addition to the Spastic Paraplegia Foundation, the Loop for Life benefits
St. Mary's Child Center, Fairbanks, IU Dance Marathon to support the Ryan White
Infectious Disease Center and Rock the Cure. Please join us for this great event
by registering online.
Our 30th CT Connection will be held on Saturday, October 2 at
the N.E.A.T. Marketplace in Hartford, CT. I am very pleased that one of our
speakers will be Dr. Jinsy Andrews who has recently relocated to the Hospital
for Special Care in New Britain, CT from Columbia Presbyterian in NYC. Also,
Keith Mullinar who trains service dogs will speak and demonstrate one of his
company's dogs. Roland Grundmann, a representative from Ride-Away (provider of
vehicle modifications), will speak and demonstrate a modified minivan. In the
past, he has distributed discount coupons for vehicle purchase and most likely
will do so again.
We have been holding our meetings at N.E.A.T. for several years now. It is a
wonderful resource facility that you can read about at their website at
www.neatmarketplace.org. They are
very handicapped accessible and located conveniently to Interstate 91.
Our meetings are open to those with PLS or HSP (and other interested persons)
and not limited to CT residents. If you need hotel accommodations, please
let me know ASAP and I'll arrange for discounted rates. We can have Friday night
dinner and socialization for early arrivals. If you extend your stay to enjoy
the beautiful CT foliage, we can also plan a group activity for Sunday.
Please let me know if you plan to join us.
Dolores
Carron
The Neurologic Disorders Support Group Meetings
will not be held during the summer months. They will resume again in September.
The Autumn in Carolina "Connection" is an opportunity to meet
others with PLS, HSP or ALS. This year's event will be held on October 9 and
will be our eighth Autumn in Carolina. The gathering will again be held in Rural
Hall, North Carolina. A block of rooms (including five accessible rooms) are
reserved at the Holiday Select (Madison Park, Winston-Salem) under the name of
Autumn in Carolina. The rate for the rooms will be $90.00 plus tax per night.
The toll free number is 1-800-553-9595 and be sure to mention Autumn in
Carolina. The motel will hold rooms in this block until midnight on September
17, so call early and be sure to get your confirmation number.
Those arriving on Friday may gather for introductions and conversation, and
share a meal at a nearby restaurant. We will have a "hospitality suite" at the
Holiday Inn Select on Friday evening for casual conversations after dinner.
The gathering on Saturday will be in the Fellowship Hall of Kingswood United
Methodist Church. The program is being developed. Lunch on Saturday will be
custom box lunches from Mrs. Pumpkin's. I will post the menu in early
September.
One activity, participation and weather permitting, will be wheel chair and
scooter races under the sanction from SAWCAR (Scooter and Wheel Chair
Association of Racing). Racers should start planning strategy and remember that
it takes a lot of expensive technology to maintain those racing machines, so
sponsors are needed to help. All sponsor donations go to SPF and
ultimately research in PLS and HSP. Please let me know if you are planning to
race.
Everyone will be invited to again share a meal at another nearby restaurant
Saturday evening.
Bettie Jo and I hope to see old friends and make new ones, especially those
living nearby who will visit with us just for the day. Please drop us a note to
confirm attendance.
Don Wilson
don-wilsonearthlink.net
informationsp-foundation.orgLet us
know about your event
Abilities and Independence Expo
Abilities
Expo showcases the latest products and services to enhance the lives of people with disabilities.
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.
Info:
https://www.medtroniceducation.com/kma/www/itb_mfl/3.listing.html
or call 1-888-743-8348
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.
First Tuesday of the month. Contact Lynette Girbach at (734)936-3087 or 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
nussear515@msn.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
Dennis Morales
Connecticut:
Contact
Dolores Carron
Florida:
Contact
Kathi
Idaho:
Contact
pbernhard@ureach.com
Massachusetts:
Contact
Kathi
Oklahoma: Contact Mark Dvorak at
czechmarkmhd@yahoo.com
Texas:
Contact
Marlene Doolen
West Virginia:
Contact
Ronnie Grove
Vancouver, British Columbia, Canada:
Contact
Jean Chambers
State Ambassador
List
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Upcoming SPF Connections
Hartford, CT - Oct 2
Winston-Salem, NC - Oct 9
Fishkill, NY - Monthly- 2nd Sat
Loop for Life
Indianapolis, IN - Aug 21
TeamWalks
Merrimack, NH - Sep 11
Raleigh, NC - Sep 19
Mt. Kisco, NY - Sep 25
Pleasanton, CA - Oct 2
Nashville, TN - TBD
TeamWalk Resource Book (pdf)
Golf Tournaments
Forsgate Country Club, NJ - Sep 20
Queenstown, MD - Nov 6
informationsp-foundation.orgLet us
know about your event
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