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.
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 HSP/PLS Support Meeting for Idaho will be held on Saturday, October 2, at
the Elks Rehab Hospital in downtown Boise. The agenda is as follows:
- 11:30 am Early birds begin arriving
- 12:00 pm Eat lunch (a few steps from our room – help with trays
available)
- 12:30 pm Dr. Friedman will discuss HSP and PLS and related issues
- 1:30 pm Medtronics representative will talk about the implanted Baclofen
pump
This is an informal gathering so the times above are approximate since it
will depend a great deal on the questions that are asked and how much
interest there is in each topic.
Please let Pat know if you plan to attend.
Pat Bernhard or 208-888-4069
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
Plans are being made to hold a SPF meeting in Fairfax,
VA - Chasing a Cure. Dr. John Fink, University of Michigan, and Dr. Mary Kay
Floeter, NIH, will be two of our guest speakers. Please save the date and
email
Annette Lockwood if you are interested in attending.
As it is during our TeamWalk season, please consider
the Chasing A Cure meeting as your TeamWalk Challenge. Become a Walker by
Proxy, collect donations to support research and bring them to the meeting.
T-shirts will be given to those that raise $250 in donations.
Please let me know if you plan to join us.
Annette Lockwood
informationsp-foundation.orgLet us
know about your event
This year's New England
TeamWalk is being held on September 11th, 2010 at the Anheuser Busch
Brewery in Merrimack, NH. This event is the main fund raiser that SPF
asks you, the patient community to participate in. By asking others to
sponsor you, you'll be helping raise money for research to cure your
disease. Since many of us don't walk, but roll in our wheelchairs, we're
now changing the name of this annual fundraiser from TeamWalk
to TeamChallenge. We'll hope you'll accept the challenge to help.
The Anheuser-Busch Brewery is fully accessible.
This year's event will be held at the Anheuser-Busch Brewery in
Merrimack, NH. The day will begin at 11:30 am in the tent where we will
have some social time and lunch. After lunch, we will be given a special
opportunity to walk or roll over to the barn to visit with the
Clydesdales. Typically, the Clydesdales are only accessible on the first
weekend of the month, so we are excited to be given this opportunity! Of
course, you are welcome to tour the brewery either before the event
starts or after, or not at all.
Click
here for more information and to register for the event. |
Join us for The Fifth Annual Magnificent Mile. It is the
kick-off race for the fall portion of the 2010 Second Empire Grand-Prix, the
USATF 1-Mile State Championship (USATF course #NC07111NW), and part of the NC-USATF
Endurance Magazine Long Distance Championship Series. In addition to the
competitive and recreational events, enjoy a street festival with food, fun,
face-painting and prizes. The Magnificent Mile will once again follow the
guidelines of the environmentally responsible "Race Without a Trace" initiative.
Click here for more information and to
register for the event.
The third annual Mount Kisco TeamWalk will be held
on Saturday, September 25, from 11:00am till 1:00pm. It will be held at the
Gazebo on Main St. (across from Starbucks). After gathering together we will
walk to the corner and then circle back to our original destination. I will have
raffles from local businesses and other giveaways. Food and beverages will be
provided thanks to the generosity of local businesses and organizations.
Please mail the
Registration form/donation to
Ann Lakin, 200 Diplomat Dr., Apt 1L, Mt. Kisco, NY 10549. Registration is $10.00 per person and early registration is
encouraged.
Come join us for a great time of fun, food, and camaraderie at our 7th annual
California TeamWalk Connection in Pleasanton, CA on October 2, 2010. At 10:45,
we’ll walk, stroll and roll together on the sidewalks of Pleasanton’s Main
Street. We can leisurely take in the shops and even a Farmer’s Market. The
stroll from the church through downtown and back to the church is an easy walk
-- OR go as far as you want -- OR not at all. You can feel free to stay at the
church and socialize and welcome back the walkers ‘n rollers.
For those that are interested, there will be a Welcoming Dinner on Friday at
5pm at The Club located at the Hilton Pleasanton.
CThe 2010 Houston TeamWalk will be held on Saturday, October 23 and
hosted by Ida Park. The event will begin at 10:00 AM at
Bear
Branch Park in The Woodlands (same location as last year). Please join us to
walk, stroll or roll to raise funds for research. More details to follow at a
later date.
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
patricia.bernhard@gmail.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
Unless otherwise noted, contact
