 2006 National Conference and TeamWalk Weekend
Long Island, New York; September 15-17
Chairperson: Betsy Baquet (in center of TeamWalk
photo to right)
Shared by Betsy
The 2006 National Conference and TeamWalk, “Today’s Technology
for a Brighter Future,” was held at the Melville Marriott and Wantagh Park.
Both events were a great success in achieving our objectives
of providing information, support and hope for the future.
This success could not have been achieved without the efforts
of many individuals, and I’m very grateful for all of their
hard work.
 Arrival Dinner
Social
  The weekend began on Friday with a Welcome Dinner at the
Melville Marriott. Despite harrowing travel conditions due to
inclement weather, approximately 50 people attended the
dinner.
Annette Lockwood, SPF President (at left in photo at right), welcomed the group
and introduced our newly appointed Executive Director, Cathy
Wilkes. Cathy (at right in photo at right) brings with her a wealth of knowledge and
expertise in the areas of fundraising and PR. The rest of the
evening was spent relaxing and socializing with old friends,
as well as new ones, and it was a wonderful way to get the
weekend started.
"Today's
Technology For A Brighter Future" Conference
 Saturday started bright and early at 8:00 a.m. with
registration, breakfast and exhibits by Nu-Tech Assistive
Devices, Advantage Orthotics and Medtronic. Approximately 100
people were in attendance when presentations started at 9:30.
Annette Lockwood opened the meeting with an informative
overview of SPF and the agenda for the weekend.
Keynote speakers Dr. John Fink, Dr. Mark Gudesblatt and Dr.
Brett Lauring (in photo at left with Annette) each presented fascinating information in the
areas of research, diagnosis and treatment options. Many were
awestruck over the progress we’ve made in research and
technology, and the “before and after” videos presented on the
Medtronic Baclofen pump and ODFS Dropped Foot Stimulator were
amazing. Dr. Fink also conducted a Q&A session during lunch,
which gave people an opportunity to further their knowledge
and understanding of the two diseases. The audience also
enjoyed a video and original song entitled, “We Can Move,”
written and performed by Mary Prevost, a voice instructor who
has HSP.
The group was then presented with a physical rehabilitation
segment by Dr. Craig Rosenberg, Director of Physical
Rehabilitation, and James Megna, P.T. and Vestibular/Balance
Specialist. Helpful information, technology and case studies
on physical therapy options, spasticity management, Botox
therapy, and balance therapy were presented.
Angela Scicutella, Neuro-psychiatrist, began the next segment,
which focused on the psycho-social issues of living and coping
with HSP and PLS. She discussed the relationship between
neurological diseases and anxiety/depression disorders and/or
cognitive function, along with the therapeutic treatment
options available. Breakout groups were then formed for
patients and caregivers/family members. Each were led by Drs.
Deb Benson and Jean Elbaum, both renown psychologists in the
field of neuro-rehabilitation. These sessions provided
participants with an opportunity to share their challenges in
a support-group setting, learn coping strategies for
day-to-day life and keep a bright and hopeful outlook for the
future. The turnout for these sessions was amazing, and the
feedback received was wonderful.
Saturday evening, two groups attended dinner at either the
Hotel or a local restaurant, La Spada. Both outings were
relaxed, enjoyable and tasty. When asked how La Spada was,
Thurza Campbell said she’s only had better Italian cuisine in
Tuscany!
See Conference Photo Galleries
here.
National TeamWalk - One Step Closer to A Cure
 What a beautiful day we were blessed with for TeamWalk Sunday!
The sun was shining on this crystal clear day with
temperatures around 75 – 80 degrees. Betsy, Eddie, her sister
Tricia, husband Gary and their children arrived bright and
early for park set-up. Wantagh Park provided the perfect
setting for our group with serene surroundings, paved walkways
and a roomy pavilion for us to relax under in the shade.
Registration ran smoothly with the help of Betsy’s niece Mary,
along with friends Alan and Jennifer. All registrants received
canvas beach bags loaded with goodies. At least 110 guests
socialized under the pavilion and enjoyed great company and a
tasty brunch. An impressive variety of raffle prizes were on
display, with Betsy’s neighbors Debbie and Cathi selling
tickets like hotcakes. Even a neighboring company picnic for
Arrow Exterminating joined the fun by purchasing $100 in
raffle tickets! SPF Magnets and note-cards were a big hit as
Betsy’s sister Margaret and John Swain (Massachusetts) worked
hard at the sales table.
Eddie Baquet, Betsy’s husband, was M.C. and “comedian” as he
welcomed attendees, made announcements and acknowledged
coordinators for their hard work and dedication for making the
weekend a great success.
At
12:00 noon, we gathered together to take “One Step Closer to a
Cure.” Everyone enjoyed a brief stroll or roll, while some
ventured further to enjoy a tour of the marina. Not a single
person was left in the pavilion as we marched for our cause
donning our vibrant TeamWalk t-shirts. It was a sight of
unity, spirit and inspiration!
Kids were entertained by nieces Megan, Kaitlyn and Liz with
facepainting, tattoos and crafts, while adults waited
anxiously as raffle winners were called. We had 15 winners
that day, including a 50/50 winner, who donated a large
portion of her winnings back to the foundation.
The day overflowed with laughter, companionship and support
for one-another. Friends were reunited, while new friendships
were made. Our steps towards a cure that day were taken with
huge strides in the spirit of hope and enthusiasm for a
brighter future!
See TeamWalk Photo Galleries
here.
A personal note from Betsy
 I’d like to start with a proverb that has become my mantra,
“It is better to light a candle than to curse the darkness.”
This Chinese proverb has been one of my many inspirations for
taking action and joining SPF’s fight for a cure.
Planning this weekend-long event has been incredibly
demanding, both physically and emotionally. However, the
rewards have far outweighed the effort. Taking on a challenge
that will have a positive impact on the lives of others, as
well as my own, has been an incredible experience. Being part
of a team effort that has made steady progress towards
treatments and cures has been both empowering and liberating,
which “flies in the face” of feeling helpless and trapped by
either of these two diseases.
Planning and attending this event has enlightened me to what
is possible now and for the future, instead of focusing on
what is not possible. I have had the opportunity to meet
wonderful, inspiring people who continue to find their way
around hurdles they can no longer jump over. I’ve been amazed
by people’s accomplishments, despite their affliction, and
moved by the outpouring of support so many are willing to
give. I have learned that identity has nothing to do with how
you walk, talk, move around, or any of the other functions
that these diseases can affect. It is what is in your heart
and how you cope with the challenges and blessings that may
come your way each day. These are lessons I will not forget.
Seeing first hand the level of dedication on the part of our
speakers to make this meeting successful speaks volumes as to
their dedication on a daily basis for finding cures,
treatments and to improve the quality of life. I’m thankful
and full of hope knowing that brilliant minds are working
towards the same goals we are, and that the light at the end
of the tunnel gets closer every day.
“It is better to light a candle than to curse the darkness.” I
encourage everyone to take action and volunteer to “light a
candle.” It’s a life-changing experience you will never
forget, with rewards of inspiration, hope and ……… a cure!
Special thanks
I would like to thank SPF for inviting me to take on the
role of National Conference and TeamWalk Weekend
chairperson. It’s been a great experience, but one that I
did not accomplish alone. If not for the help of many
people, the weekend would not have been such a success. I’ll
start with Annette Lockwood, who was there at every twist
and turn over the past six months and Linda Gentner, who
were the critical parts of my organizing team. I'd also
like to thank Linda and Kathi Geisler, who contributed an
enormous amount of time as Co-Coordinators of ten local
TeamWalk Connections, including organizing their own in CA,
MA and FL. I’d also like to thank Kathi for her hard work on
the website, print mail and e-mail promotions, Doug Brand
and Gary Lockwood for beautiful graphic design service and
Frank Pittman for managing the promotional mailing.
I’d like to extend my sincerest thanks to the
Conference/TeamWalk committee members listed below. This list
includes SPF community members, family and friends. They were
a critical part in the success of the entire weekend, and I am
so grateful to have had them on my committee.
Of course, I’d like to thank my husband and children for their
help and support. They were so understanding and patient
throughout this process as I was “a little” distracted from my
role as mommy and wife for several months! I could not have
seen this through without them.
Conference Committee
Annette Lockwood
Linda Gentner
Kathi Geisler
Ann Lakin
Bernice Sarisohn
John Swain
Wendy Reed
Bob and Ida Gustafson
TeamWalk Coordinators
Patricia and Gary Elrod--TeamWalk Captains--my right arm for the TW
Megan and Kaitlyn Elrod and friend Liz--Setup and kids table
Liam Elrod and Eddie Baquet, Jr.--Setup
Mary Englert, Alan Drawitz, Jennifer Otero--Registration
Cathi Otero and Debbie Rogers--Sold Raffles
Margaret Maniscalco and John Swain--Magnet and Note Card Sales
Lora Piazza and Nancy Tomei--Donated goodie bags and raffle items
Ellen Brach and Joyce Durnack--Food coordinators |
