National Corporate TeamWalk
Sponsors: Millipore Foundation, Medtronic, Inc.,
Athena Diagnostics, TICOM, Inc., Pezold Companies –
Columbus GA, Panasonic
across the country and Canada, 130 people joined hearts and
hands for the 2003 TeamWalk For Our Cures in Massachusetts.
The weekend featured the national "Research and Beyond"
Conference, a spectacular TeamWalk walkathon and social
gatherings and outings on Friday and Saturday evenings. The
TeamWalk fundraising tally announced at the culmination of the
TeamWalk walkathon: $141,700!
News article Panasonic Newsletter
Researcher and Beyond Conference
Conference photos -
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Brown, Jr., M.D., of Mass General Hospital (right in photo at
left), leading investigator of ALS and other neurodegenerative
conditions and keynote speaker, reviewed current advancements
in exploration of potential therapies relevant to SPF
disorders. Additionally, John K. Fink, M.D., University
of Michigan, SPF Medical Advisor (left, at left) presented two
"HSP Heredity" afternoon breakout sessions, highlighting the
progress in gene discovery and development of mouse
models. Kara Houde Ng, MS, Genetic Counselor from Athena Diagnostics, gave
information on gene testing in those sessions.
Special programs included Community Voices speaker Carolyn
Sartain Anderson, SPF board member (right), who recalled a
high school writing assignment entitled: "Adversity is the abrasive that puts an edge on
courage". It was not until decades later through
her personal health battle that
she came to understand the meaning of that statement. Additionally,
Recognition Awards were presented to Cheryl Stapley, SPF
volunteer and Mark Weber, Esq., SPF President, for creating
the HSP and PLS email support groups. These
individuals to finally connect with others. The
subsequent development of these online patient communities lead to the formation of our Foundation.
Mark, left, reviewed the history of the Spastic Paraplegia
Foundation and its position as the only organization dedicated to upper motor neuron disorders. See
slideshow (click arrows at top for each page).
Launched in January 2002 and headquartered in Massachusetts,
the Foundation's primary focus is raising funds for research
for research. The organization also seeks to provide information and
support programs. Mark introduced the SPF
Directors. He also
explained the SPF Research Grant Program and outlined the
Board (SAB), chaired by Martha Nance, M.D., Minnesota. Seven proposals are
under review for consideration of the first two
$40,000 SPF research grants. They will be awarded later this year.
An afternoon highlight was the unveiling of the newest Awareness
Quilt panel, coordinated by board member Linda Gentner, right,
and crafted by volunteer Margaret Twichell. The first panels
were made in 2000 by members of the HSP community. This new
one highlights the PLS community, formation of the SPF and
TeamWalk for our Cures. Early quilt panels were also on
Straight: Choosing and Using Adaptive Equipment" was presented by JoAnn Moriarity-Baron, P.T.,
Southern New Hampshire Rehabilitation Center (left) with the
help of Michael Schleipfer from Alternative Care Providers,
Inc. (Chelmsford, MA). JoAnn demonstrated several assistive
devices and answered numerous questions.
Break-out sessions included Spouses and Significant Others, by
Craig Gentner; Individual Consultations with JoAnn and
Michael; Speech Augmentative Devices with Jean Hightower,
Health Science, featuring Enkidu and a Baclofen Pump
presentation by Kelly Emmett, P.T., Braintree Rehabilitation. In
honor of the TeamWalk walkathon location, a Revolutionary War
program was presented by Joseph Andrews, M.D., Founder and
Director, Concord Guides and author of Revolutionary Boston,
Lexington and Concord; The shots heard round the world!
SPF board member, closed the Conference by sharing poems she and her son wrote about life with
HSP. Their messages clearly echoed the Foundation's vision of
finding the cures for HSP and PLS.
Video will be available for purchase. Please watch for announcements at the website, E-News and through the daily
email support groups.
TeamWalk Walkathon features first public appearance of IBOT and raises $141,700
(more TeamWalk photos -
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130 people turned out for the TeamWalk walkathon in Lexington.
The TeamWalk tent was erected on the grounds of the Lexington
Visitor's Center and served as headquarters for check-in,
collection of sponsorships, TeamWalk t-shirt distribution,
Walker by Proxy Photo Boards, socializing and lunch. The
Visitor's Center provided tourist information, a souvenir Gift
Shop and a diorama of the Battle of Lexington.
Early morning highlights were
demonstrations of the IBOT wheelchair, approved last August by
the FDA. Engineer Jim Turner from Deka Research, who helped
the sensational wheelchair, showed how it can easily raise to
eye level as well as climb stairs.
He later drove the IBOT for part of the walkathon.
pre-TeamWalk walkathon morning activities included a Stretch
and Get Set program by Rose Wolanski, P.T., a performance by
the William Diamond Junior Fife and Drum Corps and a salute and send-off by the uniformed Minute
Many local friends and family members
joined TeamWalk Weekend attendees for the TeamWalk walkathon. Left, Kathi Geisler,
committee chairman, helps Bob Swain, who led the walkathon, get ready
for the three-mile route along the
Minuteman Bikeway path and Lexington Center roadways. The
route was set up in three Loops, each approximately one mile.
Individuals accomplished as much (or as little) as they were
comfortable doing. As people returned to the TeamWalk
tent, they enjoyed lunch, camaraderie and visited the
Visitor's Center and surrounding shops and tourist sites. The
event concluded with David Lewis, SPF Treasurer, announcing
the TeamWalk total: $141,700.
Weekend social gatherings provide
opportunities for support, networking and fun
seventy people gathered for the Friday evening Arrival Dinner
at the Four Points Sheraton. The low-key evening allowed
people to get re-acquainted with old friends, meet new ones,
share and learn from one another. Liz Nussear, right, provided
a Community Voices talk, sharing her story of HSP and how that
has led to unexpected silver linings. For her, those include
running a monthly support group for people with neurological
conditions and participating in the SPF email support group.
She challenged the group to think about what's important in
their lives and to set personal, short-term goals.
Saturday evening outing, organized by Jim Campbell, featured a
visit to the historic North Bridge in Concord, site of the
"shot heard round the world" and the beginning of the
Revolutionary War. Many people had their photos taken at
the famous Minuteman Statue. The group also enjoyed dinner at
Concord's Colonial Inn. The Inn was built in 1716 and has
operated as a hotel since 1889, retaining the original
Revolutionary War period theme and giving the group a glimpse
back in time.
Our Cures Committee Members
Kathi Geisler, Chairman
Doug Brand, Thurza and Jim Campbell,
Rita and John DiClemente, Ed Geisler, Linda Gentner,
Maureen Hall, Ellen Kinsman, Joel and Bobbie Seidman, Bob and
Marie Swain and John Swain
our Local Sponsors and Friends who provided a helping hand
Stop and Shop, The Red Apple, Harry’s
and Harry’s Too Restaurants in Westborough, Alternative Care
Providers, Hancock United Church of Christ, Minute Man
Company, Lexington Lions Club and Sherborn, MA Fire Dept