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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.

Upcoming Events

Connections

Loop for Life - Saturday, August 21 - Indianapolis, IN

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.

Connecticut Connection - Hartford, CT - Saturday, October 2, 2010

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

Neurologic Disorders Support Group - Taking a Break

The Neurologic Disorders Support Group Meetings will not be held during the summer months. They will resume again in September.

Autumn in Carolina - Winston-Salem, NC - Saturday, October 9, 2010

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

Let us know about your event

TeamWalks -

Abilities and Independence Expo

 Abilities Expo showcases the latest products and services to enhance the lives of people with disabilities.

New York Metro
New Jersey Convention & Expo Center
Completed

Chicagoland
Schaumburg Convention Center
July 9-11, 2010
Houston
Reliant Park Expo Center
August 27-29, 2010

Atlanta
Cobb Galleria Convention Center
October 15-17, 2010


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

 

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


Let us know about your event

 

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last updated 07/19/2010
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