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Organized and submitted by Sarah Witt
The weekend of September 13th-14th was truly magnificent. Things
got rolling the morning of the 13th with the Quest for the Cure Seminar.
Starting off the show was Dr. Nina Tang Sherwood of Duke University and the
recipient of a 2006 SPF grant for HSP research. She gave a fascinating
presentation in which she discussed her research into Drosophila fly models of
human disease such as AD-HSP and the role of spastin in the nervous system. She
even brought two vials of real live fruit flies!
Next up was Wesley Reynolds, a doctoral student of PT at Elon
College who is completing his final rotation at Aquatic Physical Therapy &
Beyond. Wes gave a fabulous talk on how water-based physical therapy and
exercises can help those who suffer from spasticity. He even discussed the
insurance issues patients are likely to encounter and how to get around them.
Click here to see his
presentation.
Last on the program was Dr. Richard Bedlack, director of the Duke ALS Clinic and
a former member of SPF's Scientific Advisory Board. Dr. Bedlack talked about the
current barriers to PLS research, how they can be overcome, and some exciting
research ideas he has for speeding up the diagnostic process. Currently,
neurologists wait four years before declaring that a patient has PLS rather than
ALS, which Bedlack says makes it extremely difficult to get PLS studies off the
ground.
 Sunday
the 14th proved to be a hot, sunny day typical of early fall in North Carolina.
But that didn’t stop more than 600 walkers, runners, and rollers from
participating in the Magnificent Mile Race and the NC TeamWalk. We had a
couple hundred more folks who came out just to watch. The men’s competitive mile
race was thrilling. The winner zoomed down the straight-of-way to finish in
4:11. Another 20 men ran the mile in less than 5 minutes. The women’s race was
equally exciting. Cece Russell gave her usual impressive performance—she
finished her mile in 15 minute and 54 seconds on forearm crutches.
However, there’s no doubt about who stole the day. That award goes to
four-year-old Nathan and 22-month-old Brady Rocheleau of Greensboro, NC. The
sons of Jim and Shea, both boys have HSP and both ran their hearts out in the
kids’ 100-meter dash. The most beautiful moment of the entire weekend was the
when the winner of the women's competitive mile race (who clocked a 5:15 mile)
helped Brady cross the finish line. Dry eyes were in short supply.
Many thanks to those who attended one or both events: Craig and Linda Gentner;
Cece, Jesse, and Jim Russell; Daniel and Roberta Gibbs; Jim, Shea, Nathan, and
Brady Rocheleau; Gary, Linda, Amy, Scott, and Claire Corsmeier; Ronnie Grove and
friends Mary Jo Knight and Linda Buzzard; Don and Bettie Jo Wilson; Vickie and
Tony Beauchamp; Judith West; and Steve Travers. Equal thanks and praise goes to
the numerous volunteers and sponsors who helped make it all possible.
Organized and submitted by Ann Lakin
 On
September 5th and 6th, the SPF participated in the Mt. Kisco Sale Days. We had a
vendor table, which the Mt. Kisco Chamber of Commerce paid for. At the table, we
sold various SPF items, gave out brochures explaining PLS and HSP, and promoted
our TeamWalk.
The TeamWalk was September 7th, and the weather was gorgeous. About 25
people participated. Around 12:30, we took our short walk to the end of the
street and then came back. Once everyone settled in, we did the raffles. Betsy
Baquet was the big winner. Besides the 50/50, she won about three other items.
Betsy donated her 50/50 winnings back to the SPF.
So many people and local businesses gave so generously. One man bought $50.00
worth of raffle tickets. Various businesses donated food and participants
brought water.
Everyone was pleased with the lovely items that were raffled off and a good time
was had by all. From the raffles we earned $168, from registration we got $155
and we received $622 in donations. All in all, it was a very successful weekend.
Organized by Kathi Geisler
Summary submitted by Thurza Campbell and Kathi
Thirty people gathered around the picnic tables by the shore of
Horn Pond in Woburn, Massachusetts to share tidbits of their own stories. While
many were people who regularly attend the SPF Connections in MA, several drove
in quite a distance from Maine, Connecticut and New York to come to a first-time
SPF event.
We heard Pat tell of the wonderful outings she’s found for her wheelchair bound
son “T”, including climbing a mountain and skiing. John Swain donned an English
device, Musmate, that improves one's gait by helping lift the foot up.
Musmate
was recently approved by the FDA for sale in the United States.
Pahl Rice read an article Joel Seidman wrote about exciting recent stem cell
research findings from Harvard Stem Cell Institute. Pahl also shared the
inspirational poem Don't Give Up (by Eagle Eye Cherry). Maureen Hall shared
about her recreational sports adventures through Northeast Passage, including
biking, waterskiing and kayaking. Several people described benefits they are
finding through having the baclofen pump. John thanked Kathi Geisler warmly for
all she has done and continues to do for SPF and especially those of us in New
England.
Following the sharing and lunch, we had our TeamWalk on the sidewalk along the
Pond. The weather was spectacular and the scenery delightful - a great setting
and ending for another wonderful TeamWalk Connection. Although sponsorships are
still coming in, this Connection should raise around $40,000 for SPF Research
Awards.
Don't Give Up poem, by Eagle Eye Cherry
All our dreams
are gone, With a loss of faith.
We're still hanging on For another day.
It's so hard to see that it's going to get better,
And when will that be.
It's hard to say.
We must believe;
That if we give, we will receive.
Yes, we must believe,
That it's going to get better.Don't give up.
Never give up!
We won't stop giving,
Giving all we got.
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Now we're breaking away
From what holds us down.
This could be the day
That brings out the light.
Now we're marching on
With the will of never giving up.
This time we'll have won
With out a fight.We must believe...
Don't give up.
Never give up!
We won't stop,
Giving all we got.
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Forgive and
forget
don't hold on to the bitterness.
Filled with regrets we don't wanna go there again.
The glass is half full
so lets get it on with togetherness,
And our number will grow we will prevail in the end.
Don't give up.
Never give up!
We won't stop,
Giving all we got. |
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