Connecting our Community
Please visit our
Calendar to see what's coming up and
contact us about organizing something in your area.
We Can Move - Song written by Mary Prevost for SPF Kentucky Connection - July 2009 Major Events in 2007 and 2008
Spring Fling
Community Connections and other events of
interest
Spring Forward Seminar Connection, Framingham, MA Sixty people from MA, CT, NH and ME gathered for our annual Spring Forward Seminar Connection held at the Sheraton Hotel in Framingham, MA. The event began with a program by Kathi Geisler, SPF Co-Founder, who shared the story of the development of the HSP and PLS online communities, their merging and the launching of the Spastic Paraplegia Foundation. She noted that in seven years, the organization (still 100% volunteer managed), has now made some $2M available to researchers and helped thousands of people seeking support and information. Mike Podanoffsky, SPF President, and Jim Campbell, SPF Board Member, were introduced. They echoed Kathi's comments about the remarkable story of SPF, what a difference we've made and encouraged the audience to get involved with the 2009 New England TeamWalk Connection. The event featured two wonderful programs: Robert Redden, M.D., Ask the Doc Session
Mary Cooper, M.S. Adapted Physical Education Teacher, Lakshmi Adaptive Chair Yoga
Additionally, a Table Topics session was held during lunch where people exchanged answers to 3 questions: 1) What medications do you take; 2) What's a Silver Lining of having HSP/PLS; and 3) What's your biggest challenge. After lunch an individual from each table shared their answers with the audience. Many people lingered after the Seminar to spend time chatting with other attendees. Please contact kathisemail@aol.com about future Connections in MA.
Senior Project is a Class Act
Swim with the Dolphins! Kathi Geisler (SPF MA and FL Ambassador) was recently on a Caribbean Cruise with 15 of her family members. She and a few other family members participated in a Swim with the Dolphins excursion on Cozumel. It was wonderful!
Please contact Kathi about events and get-togethers in MA or FL at kathisemail@aol.com
St.
Petersburg, FL Lunch Connection A lovely Lunch Connection was held at the home of Jeff Litt. We were fortunate to have two exciting opportunities: an Ask the Doctor session, featuring Jeff and Flora's neurologist and an Ask the Pharmacist session, featuring Jeff, who is a registered Pharmacist. There was a lot of discussion about PLS and HSP and as they relate to one another and ALS as well as sharing about personal stories, treatments and managing life with these conditions. Additionally, Jeff and his wife Diane prepared a fabulous lunch that everyone enjoyed!
Please contact Kathi at kathisemail@aol.com about future Connections in Florida.
Salt Lake Valley Luncheon Connection Submitted by Linda Gentner
A snowy afternoon provided the perfect backdrop for
the Salt Lake Valley Luncheon Connection. We had a
lively communication session with newcomers asking
many questions about HSP and the SPF . Connie Duran
and Geneva Miera fielded their HSP questions, and
Linda Gentner talked about the SPF , its web site
and the 2009 National Conference. She also did a
short presentation on 2008 event and the 2008
National Conference. Linda’s husband Craig provided
more details about previous conferences. By the end
of lunch, Connie and the Larson family started
making plans for holding a TeamWalk or some other
kind of a fund raiser next summer in the Salt Lake
City Area. NE Ohio Connection A casual lunch connection was held in northeast Ohio on Oct. 11, 2008, at Panera Bread in Mentor. Thirteen people attended: Gordon and Mary Jane Westerfield, as well as their son and daughter-in-law, who drove about an hour from Cuyahoga Falls to join us; Sandy Slater (whose mother lives in Dayton and has PLS) came from Bedford; JoAnn Potter (HSP) and her daughter; Kathy Wilde and her daughter Anna (HSP); Belinda Poole (PLS) and her two young sons; and Maryann Mayer (HSP). It was an especially exhilarating experience for the three people who had never met anyone else experiencing the same challenges. During the course of our time together two additional attendees joined us via cell phone. Sandy called her mom and dad in Dayton, and we were able to say hello and add some joy to their day. There was so much spontaneity and sharing of experiences, it was hard to believe that three hours had already passed when we said our goodbyes. We all agreed that we should meet again and would look forward to others joining us. We are open to suggestions for a meeting place that would bring more of us together. Email Maryann Mayer at mayersms@oh.rr.com with any suggestions.
Idaho Connection
Tampa, Florida Fourteen people gathered for a delightful Cookout Connection afternoon around the pool at Bruce Maser's home on Davis Islands (Tampa). Bruce took the photo at right - see him in the first thumbnail photo below. The "oldies" (Bruce, Kathi and Ed, Karen and Jim, Flora and Doug, and Callie and Rudy) enjoyed re-connecting as well as welcoming "newbies" Myrna (PLS), from Tampa who brought her two daughters and Steve (PLS), who drove all the way from Naples to participate. Individuals shared stories, treatments and concerns regarding managing life with PLS or HSP. Bruce grilled hamburgers and hotdogs which everyone enjoyed along with the assortment of side dishes and desserts that people brought. Bruce also demonstrated his recumbent trike bike, which he rides several times a week for exercise. Several people took rides. It was the first time Myrna and Steve met other people with PLS and they, along with everyone else, look forward to future FL Connections.
Austin Patient Connection
Twenty-two gathered at the Brick Oven for an
afternoon of information, sharing, and learning from
one another. Some drove in from locations three to
four hours away. While visiting in Austin, one
couple on vacation from England came to the
Connection. They took away some ideas on how to hold
their meetings in England. We Texas folks (who don’t
have Texas accents, of course) enjoyed listening to
their English accents.
Before ending the Connection, we had goodie bag drawings. Everyone took a little something as a reminder of the day. I told the participants that I hold the Connection each year because I remember the very first time I met someone else with HSP and what a difference that meeting made to my life.
Southern California Connection
We held the third Southern California Connection at
the HT Grill in Redondo Beach, CA. We had the
pleasure of dining together and spending three hours
sharing our goals, our victories, and our
challenges. Twenty-two people attended from as far
south as San Diego and as far north as the San
Francisco Bay area. Linda and Craig Gentner drove
400 miles to be with us.
I Live, I Learn, I Achieve Conference
Lexington, MA Picnic Connection - July 20 The annual Picnic Connection was held once again on the grounds of the lovely Lexington Visitor's Center. The Visitor's Center was the site for the 2003 and 2004 National TeamWalks, each attracting some 150 participants. Since then, the Massachusetts Group has held two local TeamWalk Connections as well as summer Picnic Connections there. Each Picnic Connection includes a "Show and Tell" time where people can demonstrate or share about something new that is benefiting them in addition to the usual sharing, socializing and enjoying refreshments. This year, the event was an intimate group of 10 people.
As indicated above, Maureen and Kathi and shared about their biking, kayaking and waterskiing on their own and with Northeast Passage. You can see YouTube videos of their adventures here: http://www.youtube.com/watch?v=RsCKLoyvU78 and here http://www.youtube.com/watch?v=YmsYpMjZR7M The next event in Massachusetts will be the TeamWalk Connection Forum in Woburn on September 13. Click here for information.
Austin Learn to Windsurf Weekend - May 31-June 1
The Austin Windsurf Club chose the Spastic Paraplegia Foundation as their
charity for the 2008 Learn to Windsurf Festival held May 31 and June 1,
2008. Many volunteers and two professional windsurfers, Roger and Ellen,
taught 60 people to windsurf after on-land instruction. Then the students
hit the water for some fun.
Spring Fling - May 2-3, 2008
The eighth annual Spring Fling-WV Connection was held in Berkeley Springs,
WV on May 2nd and 3rd. Old friends and new gathered for a grand time. It was
agreed that this was the best Fling yet. Maybe we are just becoming very
familiar and comfortable with each other as folks return from North
Carolina, Ohio, Florida, Pennsylvania, Virginia, Maryland and West Virginia
year after year.
Robert Polander from Hanger demonstrated the Walk-Aide and several of us were able to try it. It was very informative as well as a lot of fun watching the reactions to the electrical stimulation. About five years ago we started having our Friday evening dinner at the Francis Asbury United Methodist Church. The United Methodist Women fix a delicious meal and we get to use the social hall making it a win-win situation. Some of my co-workers help the ladies with serving and clean-up. Now they have became an integral part of Spring Fling. Mark your calendar now for the first weekend of May in 2009. We look forward to having you join us.
Tulsa, OK - April 12, 2008
We had a great time at the Tulsa Connection on April 12th, 2008. Eleven
people met at the Delta Cafe for lunch and had a wonderful get together. The
attendees came from, Ponca City, Claremore, Broken Arrow, Norman, Oklahoma.,
and Springfield Missouri. After lunch, we listened to a speaker from the
"The Center For Individuals With Physical Challenges" (
http://www.tulsacenter.org). There are only three centers like this in
the United States and one of them is in Tulsa Oklahoma. It is very much like
a YMCA but it is designed for people with physical challenges. There were
many questions asked and answered about the center.
After the speaker, we had a discussion about the various ways we cope with
our situations. Many things were learned from each others experiences. For
instance, Mike Church brought some shoes that he put a tip on the sole by
himself that allows the toe to slide as opposed to catch on the ground when
walking. He gave us the "how to" knowledge so we can do it ourselves at
home. Thanks Mike!
Kate Hylla, from Claremore, plans on starting to have a Connection in that
area on a regular basis. Stay tuned for detail as they develop. Let's hear
it for Kate!
First SPF Connection held in Seattle
The first Seattle Connection hosted by Jackie Bollinger was held on February 23. Sandy Efseaff demonstrated the WalkAide for the group. She will also make a presentation at the Seattle TeamWalk on September 6, 2008. Ron Noren is hoping that other PLSers will come to the TeamWalk, he is anxious to meet others with it. Don and Gayle Gould drove up from Oregon and Ron Noren from Tacoma joined the group. Robert Haugland loves to cook and wants to open a bistro. His pastrami recipe is to die for (his email even starts with pastrami). Karl is busy raising a family that includes two nieces that they are helping to raise. Also joining the group were Julie and Mark Boyd. Mark commented that thanks to Julie slowing down as a result of HSP, it forced him to slow down which helped him to really enjoy the beauty around him. Thanks to Jackie for putting the Connection together.
Community members invited to A&M University
Jane Anne King, HSP - Dr. Mary Pope asked to me to come to her PT class and talk about HSP. I of course told her yes. I was so honored to do this. I arrived at the A&M University. There were 10-15 students all seniors. They took my vital signs, pulse, blood pressure, respiration rate check the sensation, flexibility etc. They wrote a report on me and we talked about how HSP started on me, how I deal with it, what type of medication I was on. I am on such a HIGH. I had one of the best times I have had in a long time. We made a video which is two hours long. They loved the SPF Foundation pages and Dr. Pope said they got lots of information off of it for their students. They also went to Dr. Fink article and was helped a lot in learning about HSP. They were so happy that we would do this for them. But I told them after all they are the first people that have asked us to participate in anything like this. Jerry Simmons, PLS - A day at A&M University for me and Zeke !!!It was a great experience for me! and I am sure I gave the students an earful. Having worked in the prison system 20 years of my life, I am pretty straight forward....But always try not to offend or hurt feelings.... I would like to thank Dr Peggy Pope for invitation and the students for the free physical going over ... Jane Anne
Liz Lepper was awarded the "Most Inspirational
Camper Award" at the University of California
Lunch at the Lake Connection, Odessa, Florida, October. Seven people gathered at the lovely lake home of Bob and Maria Manz for a delightful afternoon. Maria prepared a wonderful spread of snacks and hors d'oeuvres, the weather was superb, the view of the lake spectacular, the canoe ride a delight for Bruce and Kathi, the Manz's four 4-legged friends charming and of course the company outstanding! An added plus: Bruce and Kathi were tickled to go home with cuttings from Bob's greenhouse. The group hopes to get together again in early December.
Shared by Liz: Dr Biester is a graduate of the
University of Texas and hold a clinical psychology
degree from McClean Hospital/Harvard University. She
is an adjunct assistant professor of physical
medicine and rehabilitation and director of
neuropsychology at the Hospital of the University of
PA in Philadelphia. She will be a repeat speaker for sure at our next PA Connection. After our lunch (after Sue Me finished Helen K's favorite dessert at Applebee's we discussed helping with the first PA Teamwalk that Cassandra is organizing for September 9th at Knoebel's Park in PA.
Reno, NV, June. SPF member Geoff Kettling races in the annual Tour de Nez!
Boise, ID, September. Pat Bernhard organized the annual Boise Connection. She shares:
"Our Connections lunch was GREAT!! We are a small
group but as I seem to say every year, there is
always at least one person who receives literally
life-changing information, and it is so worth it!!
Contact pbernhard@ureach.com Denver, CO, September. Dale Rutschow once again organized a Colorado Connection. A note from Greg, one of his usual attendees:
"We held our Colorado Connections meeting this past
Saturday. Dennis Morales provided our meeting
location - St. James Meeting Hall. We had 9
participants, and our guest speaker was from
YOUCANTOOCAN Inc. (www.youcantoocan.com). Dennis
goes by their store almost daily in his work
activities, and went in to check it out.
Youcantoocan is a companythat provides items to
assist with a more independent life dealing with
aging and disability issues. They have their store,
as well as a catalog and online opportunities. She
brought along some of the items that are sold that
might be useful in our situation. She had gone to
the SPF Foundation website to first learn about PLS
and HSP. Contact Dale Rutschow Tampa, FL, October. Kathi Geisler and her committee (Flora Brand, Doug Brand and Tawny Swain Castle) organized the first New Moves Retreat for women with HSP or PLS. A TeamWalk Connection was held at the conclusion of the event, which welcomed family members and friends of conference attendees and other SPF community members to join for a Breakfast Connection and a TeamWalk to raise funds for research.
The New Moves Retreat brought courageous women who “walk the same walk” together for an inspiring, enlightening, educational and empowering weekend. In a relaxed and supportive setting, ladies made new friends, had fun and explored concerns that matter most as women with a walking disability. The experienced helped us gain new awareness, perspectives, tools and techniques to help us thrive as the extraordinary women we are.
From Connie, an attendee: "To all who did such
wonderful work on making out Retreat a HUGE
success....Bless you! To all who attended and made
it wonderful and thrilling to be part of such a
great group of women, THANK YOU! If I never make
another Retreat....This Tampa one will be imbedded
in my memory forever. Nothing could beat the Please see the following glorious slide shows: Faces of New Moves: http://photoshow.comcast.net/watch/UI4bQ2XZ New Moves Retreat: http://photoshow.comcast.net/watch/eR4Gu2mA Tampa TeamWalk: http://photoshow.comcast.net/watch/yr4Fv4SW |
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The
ninth annual Spring Fling organized by Ronnie Grove
was held in Berkeley Springs, WV on May 1st and 2nd. The group met for
dinner at the Francis Asbury Church on Friday where
they
shared dinner and many stories. 
Mark
Dvorak (HSP) and Terry Jones (ALS) both have
rare diseases and live in Oklahoma. They went to the
state capitol of Oklahoma to thank governor Brad
Henry for declaring February 28, 2009 "Rare Disease
Day" in Oklahoma. Governor Henry joined forces with
several other US states and the United Kingdom by
signing a proclamation declaring this special day
for the first year in the US and the second year in
the United Kingdom. In the U.S. alone, there are over
600 rare diseases. A rare disease is classified by
having 200,000 individuals, or less, that are
affected by a particular disease. Hopefully, with
your help "Rare Disease Day" will be recognized by
more U.S. states and countries around the world next
year. Please help spread the word for rare diseases
in your state and country. Mark Dvorak 
Seniors
at J.W. Mitchell High School are each required to
engage in a year long project reflecting long term
career goals. Since 8th grade, Stephanie Palazzolo
expressed interest in becoming a physical therapist,
so her senior project targeted that area of health
care. While conducting exhaustive research,
Stephanie discovered the SFP website, which provided
her with a wealth of valuable information for her
assignment. 
Philadelphia,
PA Spring Connection, June. The first PA
Connection, organized by Liz Nusseaur (who organizes
a monthly support group for people with various
types of neurological conditions), featured Dr
Biester from the hospital of the University of PA. 
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