Connecting our Community
Thanks to community volunteers, we are able to organize opportunities for
people concerned with SPF
disorders to meet others, learn, share, and have fun.
Depending upon the location and the coordinator, these may be informal
gatherings, regular support groups, annual events, national conferences,
social outings, or just meeting for coffee or lunch to chat with others.
We are also working to develop regional groups and to partner with related organizations to
provide opportunities for people in our community to connect with others. As
a new organization, we seek volunteers who can help. Please visit our
Calendar to see what's coming up and
for information about organizing something in your area.
Some events held this year
2003 TeamWalk For Our Cures National Conference and Walkathon.
More than 130 people from across the country joined us for this year's
signature weekend in the Boston, MA area. The Research and Beyond
Conference featured leading experts and the TeamWalk Walkathon featured the
first public appearance of the IBOT wheelchair. Please see
TX, November. A Casual Connection Luncheon was organized by Marlene
Doolen, SPF Secretary (far right in photo) at the Olive Garden Restaurant in
Harlingen. Marlene and her husband Carrol (who took the photo) were visiting
relatives for Thanksgiving and held the Casual Connection while in the area.
Attendees enjoyed meeting others with SPF disorders and sharing stories.
Marlene and Carrol presented a special program Carrol created on DVD that
highlighted many of the year's exciting activities.
Marlene organizes events in the Austin, TX area. Contact
WI, October. The first annual conference in Milwaukee was organized by
Annette Lockwood, board member. Forty people attended the "Time to Share and
John K Fink, M.D., University
of Michigan, guest speaker (at right) presented Progress in Understanding
HSP/PLS. Jennifer Terrien, Clinical Specialist for Medtronic, spoke about
Intrathecal Baclofen Therapy and the new pumps that will be available in the
near future. The Role of Physical Therapy was addressed by Rob Horkheimer, PT
in the Spinal Cord Disorder unit at Froedtert Memorial Lutheran Hospital in
The Milwaukee group intends to
hold an annual conference. Contact
TX, September. The second Austin Dinner Connection was held with
another great turnout of people. The event featured public speaker
Steven List, who talked about relationships and the importance of
communicating love and concern. His awareness came after a heart attack
and he is now a popular public speaker.
There was also a great round-table sharing session with lots of ideas
shared on coping with our disorders. Certificates of Appreciation were
presented to three different groups who support the SPF.
The Austin group now plans to meet quarterly. Please contact
Denver, Colorado, July. The first Colorado
Connections was a Luncheon Conference organized by Dale Rutschow and Lisa
Nichols (at right) at the Canyon Cafe restaurant. The
event featured Yvonne Rollins, M.D., an MDA researcher who
studies motor neuron diseases. Her presentation was "HSP
and PLS: comparison and treatment of spasticity".
Not only did the twenty-nine attendees find the
presentation informative and helpful, but Dr. Rollins was
able to recruit many new subjects for critical research.
Plans are to hold the next event in January. Contact
Phoenix, AZ; June.
A fabulous Connections Conference organized by Bonnie Guzelf was attended by
individuals from across the country. To add to the weekend, a Hot Air Balloon outing
was organized by Liz Nussear. Please go
to Phoenix to see a full summary and lots of photos.
NY; June. When John and Rita (at left) traveled to Albany, they arranged
through PLS Friends to meet up with Cookie and Bill for a casual Connections. They had a great afternoon of getting to
know one another and swapping stories.
Austin, TX; June 2003.
A Learn to Windsurf Day benefit was held on June 7 in Austin Texas.
was raised for the Research Fund. Thanks go to Marlene
(SPF Secretary) and her husband Carroll Doolen. Marlene
has had to give up her windsurfing hobby due to HSP,
however, they are still active with the group and Carroll
still enjoys the sport. Please contact
Myers, FL; June.
A Connections Conference
organized by Carol Liquori and Ann White was held at Lee Memorial
Hospital, Fort Myers, for nearly twenty people. A full agenda included
programs on Mobility Products, Lifeline Medical Alert,
Intrathecal Baclofen Pump, Theft Identity, and The Great
Balancing Act – “Avoiding Falls”.
The Ft. Myers event was the follow-up meeting after the
Ft. Lauderdale meeting earlier in the year. The group
hopes to hold future meetings in Florida, with sites set
next on Orlando. Contact
Chicago, Illinois, April. The first
Illinois Connections Conference was a "Dinner with the
Experts", featuring Dr. Teepu Siddique from Northwestern
University (far left). Dr. Siddique's laboratory is
dedicated to ALS and other neurodegenerative disorders and
was on the research team that discovered two genes
responsible for hereditary forms of ALS, one of which also
causes a juvenile form of PLS. There were 27 attendees
with many pictured in the photo.
Berkley Springs, West VA; April. The 3rd
annual Spring Fling social weekend, organized by Ronnie
Grove, was held April 4-5. A dinner social was held Friday
night and organized by Ronnie’s mother. Saturday featured
a fun day of enjoying everyone’s company and the delicious
treats that many people brought to share. Six of the 24
attendees were meeting “others” for the first time and one
later commented, “I now face the future with a bit more
confidence than what I had last Friday morning.”
(front row in green) organizes her annual Spring Fling
event to provide a low-key opportunity for individuals and
loved ones to gather, share stories, learn from one another and have fun.
April. An Atlanta Coffee Gathering, organized by
Kay Bell, was a great opportunity to meet people with HSP
and PLS. Conversation centered around managing the daily
walk with the disorder and dealing with challenges. The
National Ataxia Foundation Meeting was being held at the
same time at the hotel, which provided an opportunity to
see and talk to vendors providing products and services
for people with disabilities.
remarked: "I have never met a fellow HSPer or PLSer until
the gathering. Some of us needed reassurance and a
shoulder to lean on. All who came to the gathering left
with a smiling face and a positive attitude. HSP and PLS
may be rare disorders, and our numbers are few, but we are
one and that is what the coffee gathering was all about."
seated in the photo on the left. She runs a monthly
Support Group meeting in the Los Angeles area for the
Ataxia Foundation which includes people with HSP and PLS
as a partnership group.
area; April. The quarterly meeting for the
Massachusetts Chapter was held in Woburn at the Sheraton
Inn. The Lunch Connections Conference entitled "A
Balancing Act" attracted twenty-six people and featured an informative presentation by Joann
Moriarty-Baron, PT from Southern New Hampshire Physical Therapy.
There was also a
special Round-Table discussion of "What Helps
You Keep Your Balance in Life", with common themes including family,
prayer, exercise, laughter, and hobbies. Dawn Lucier,
P.T., from Medtronic gave a short program on the Baclofen Pump.
meets quarterly for various events including National
Conference, Lunch Connections Conferences and general
support group meetings and outings. Contact
British Columbia, Canada; February.
Canada Connection Conference attracting 26 people was held at the
Richmond Inn and organized by Jean Chambers, Sue Hunter,
and Margaret Scott, at right.
Keynote speaker was Sian Spacey, M.D., from The University of B.C. After the presentation,
there was a lengthy question and answer period. During lunch, people had the opportunity to
check out a variety of assistive devices on display thanks to John Russell, Shoppers Home
Care. Marie Loh, a pharmacist from London Drugs, spoke about drugs to treat spasticity,
bladder/bowel difficulty and pain. Kenn Quayle & Brian Mackenzie led a discussion on care
The day wound down with a casual chat/sharing exchange. All agreed it was a fabulous event
and appreciated the opportunity to meet others, share, and learn.
The group intends to hold another event in the fall. Please contact
Ft. Lauderdale, Florida.
Twenty-two people concerned with PLS and HSP gathered for a
friendly lunch gathering at the Holiday Inn. It was a great
afternoon to share stories and learn from one another. Ann (green
jacket in photo on left) and Carol (center in photo on right) will
work to organize and facilitate Florida meetings throughout the year in various locations. The next event
will be held in June in Ft. Myers. Contact
Fifty people attended the first Ohio Connections Conference, organized by Annamarie Wagner.
John K. Fink, MD, University of Michigan, SPF Medical Advisor (at right on the left speaking to
attendee), was the featured speaker. Dr. Fink provided an in-depth discussion of HSP and
PLS and answered numerous questions.
Many people left, feeling that for the first time, they had a real understanding of their
conditions. For most, it was the first time meeting others with a similar condition.
The group hopes to hold future events in Ohio.