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2010 National Conference

May 21-23, 2010, LAX Hilton, Los Angeles, California

"The Star in Our Future is the Cure… through Research"

The focus of this year's conference is you and your family. The topics covered range from research to physical therapy and caregiver support. It is an opportunity to share and learn effective solutions to everyday problems. At the conference you will meet many individuals who share the same diagnosis.

Los Angeles is a vibrant city with many opportunities to explore and visit. The LAX Hilton has a free shuttle service to Marina Del Rey, where you will find a beach, plenty of fine dinning, shopping, and relaxing.

The LAX Hilton was chosen because of its location, free shuttle service to the airport, and ample true accessible rooms. These rooms were inspected by the SPF to make sure they truly meet the needs of our members. All rooms are $95/night.

The conference begins with a Friday night dinner and a presentation. The conference continues on Saturday with several topics ranging from research to therapy and relaxation.

Keynote: Gary Karp
Life on Wheels

The keynote will be delivered by Gary Karp, an internationally recognized public speaker, corporate trainer, facilitator, author, and editor. He has been living — fully — with a T12 spinal cord injury since 1973 when he was injured in a fall from a tree at the age of eighteen.

Gary is going to tailor his talk towards our group - people who make a sometimes long trek from refusing to use a cane when they should, refusing a walker until, finally, finding freedom in using a wheelchair - a bit different from his personal perspective of a single catastrophic incident that put him in a wheelchair.

For his unique and extensive contributions to disability awareness, in 2007 Gary was inducted into the Spinal Cord Injury Hall of Fame as a disability educator.

Since his injury, Gary has earned a graduate degree in architecture, worked for eleven years in the presentation graphics industry as a designer and production manager, then began providing ergonomics training and consultation services to companies in the San Francisco Bay Area where he lives with his wife Paula and their yellow Labrador Retriever, Nava Leah.

He is the author of three books:
Life On Wheels: For the Active Wheelchair User
Choosing A Wheelchair: A Guide For Optimal Independence
Disability & the Art of Kissing

For more information about Gary, go to http://www.lifeonwheels.org/

Bruce Binder and Lakshmi Voelker
Get Fit Where You Sit

Bruce Binder introduces us to Chair Yoga. It offers you the ability to improve your health through an amazing form of adaptive exercise. You sit in a chair or your wheelchair so you can receive yoga's healing and restorative benefits that have been known for thousands of years. Yoga relaxes your body and mind, improves your musculoskeletal fitness and flexibility, and elevates your overall health and well-being. Lakshmi Voelker created Lakshmi Voelker Chair Yoga in 1982 and was joined by Bruce Binder in 2003. He manages the business while Lakshmi spends her time certifying teachers around the US (including the Mayo Clinic). There are over 350 certified teachers in the US, Canada, and Japan. Their teacher training emphasizes contraindications including an entire section on wheelchair yoga. They will explain Chair Yoga and then have everyone participate in a group experience and demonstration.

Featured Speaker: Dr John Fink
Current Research and Understanding of HSP and PLS---What's New and Exciting

Dr. Fink has been the Scientific Medical Advisor for the SPF since our founding. After graduating in biology from the University of Cincinnati, and Medical School at the Medical College of Ohio, he trained as a neurologist at the University of Virginia and in specialized aspects of neurology and medical genetics at the National Institutes of Health. As a Professor of Neurology at the University of Michigan he directs the neurogenetic disorders program. He also studies genes that cause these disorders, recently identifying two genes that cause forms of HSP, and is developing animal models of these diseases, a pathway toward finding a cure. He also trains physicians and scientists who are studying these disorders. He was the recipient of an SPF research award in 2003 and again in 2006.

Dr Corey Braastad
Genetics and HSP/PLS Testing

Dr. Braastad, a member of the Board of Directors for the SPF, is also currently a Scientist/ Manager of Operations at Athena Diagnostics. Athena Diagnostics is a molecular genetics diagnostics company specializing in the diagnosis of rare neurological, renal and endocrine disorders. At Athena he has led teams that (1) develop and launch new diagnostic assays, (2) routinely run diagnostic tests on patient samples, and (3) improve the quality of diagnostic tests by improving result interpretation. He is currently leading efforts to implement a DNA sequence variant investigation program and also a quality improvement program at Athena. Dr. Braastad received his undergraduate degree from the University of Massachusetts Dartmouth. As a graduate student at Brown University, he was in the Molecular and Cellular Biology and Biochemistry (MC&B) Department working on defining a DNA damage inducible gene promoter. He then worked as a post-doctoral fellow at the University of Massachusetts Medical School in the Department of Cell Biology to define the cell-cycle regulated histone H4 regulatory elements.

Mark Weber
Research Grants Evaluation

The SPF receives many more research grants than it can fund. It is important that it fund projects that are scientifically sound. Mark will explain to us the way our research grants are evaluated by our Scientific Advisory Board, a group of neurology specialists who tell us which research proposals are most worthy of our funding. He will also explain how the Board of Directors then selects those grants that will be funded.

Mark is a founding Board member, co-chaired the Foundation Steering Committee and served as the first SPF President. He is an attorney with eleven years experience as an Assistant Attorney General and Assistant District Attorney. Mark has been an active SPF community leader since 1999, launching and managing PLS Friends, and serving as editor of a PLS newsletter. Mark holds a BA in economics and psychology and a JD. Mark and his wife and two boys live in Sherman, CT. Mark serves the SPF as Legal Counsel and also chairs the Research Committee.

Jim Campbell
Caregivers

Jim will lead a breakout session on issues specific to caregivers.

National Conference logo

Conference Location

LAX Hilton
5711 West Century Boulevard
Los Angeles, California 90045
(310) 410-4000
map, directions

To reserve a standard room, go to hilton.com
To reserve an accessible room, follow these instructions.

Group Code: SPF

Conference Highlights

Fri, May 21. Friday Night Dinner
Craig Gentner
Welcome and Introductions
 
Malin Dollinger and Craig Gentner
Welcome to the conference you'd rather not qualify for
 
Followed by social meet and greet
Sat, May 22. Conference
Keynote: Gary Karp
Life on Wheels
Gary is an internationally recognized public speaker, author, and editor. His talk is tailored towards our group - people who make a sometimes long trek from having difficulty deciding to use a cane, then, postponing using a walker until finally finding freedom in using a wheelchair.
Presenter: Flying Wheels Travel
Handicap Travel
 
Featured: Dr. John Fink
Current Research and Understanding of HSP and PLS---What's New and Exciting
Dr. Fink has been the Scientific Medical Advisor for the SPF since our founding. He was the recipient of SPF research awards in 2003 and in 2006.
Presenter: Chair Yoga
Get Fit Where You Sit
 
Presenter: Mark Weber, Esq.
SPF Research Grants, Funding, and Our Scientific Review Process ~ How Contributions Will Become the Cure
 
Presenter: Gary Karp
Adaptation to Disability
 
Breakout: Jim Campbell
Caregiver's Time
 
Breakout: Paul Webber
The WalkAide System
To assist walking problems due to foot drop. Paul is a Certified Orthotist Specialist with Hanger Prosthetics Orthotics
Breakout: Dr. Lenore Dollinger
Stress Relief by Acupressure
 
Breakout: Groups
Topics of interest, such as: Baclofen Pumps, Specific PLS needs, Physical Therapy, Children with HSP
Sun, May 23.
State Ambassadors breakfast
led by Linda Gentner
 
Presenter: Dr. Corey Braastad
Genetics and HSP/PLS Testing
 
Group bus tour
TBD
 
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