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The First International Symposium for Hereditary Spastic Paraplegia


 

The First International Symposium for Hereditary Spastic Paraplegia
May 25-27, 2000
University of Michigan, Ann Arbor, Michigan

 HSP Symposium Agenda


Thursday May 25

8:30 - 9:00 A.M Symposium overview and methods to achieve consensus, John K. Fink, M.D

Session I, Clinical features and pathophysiology of hereditary spastic paraplegia, Tom Bird, M.D., Session Chair

9:00- 9:30 A.M. Clinical signs and symptoms of uncomplicated HSP, John K. Fink, M.D., Associate Professor, Univ. Michigan, Ann Arbor

9:30 - 10:00 A.M. Autosomal recessive HSP and Comparison between autosomal recessive, autosomal dominant, and X-linked uncomplicated HSP, Paula Coutinho, M.D., Hospital de Sao Sebastiao, Portugal

10:00 - 10:10 A.M. Break

10:10 - 10:40 A.M X-linked HSP: clinical features, Franca Cambi, M.D.Ph.D., Associate Professor, Dept. of Neurology, Thomas Jefferson Univ. Medical School, Philadelphia

10:40 - 11:10 A.M. Complicated HSP: clinical subtypes and classification, Djamel Grid, M.D. Neurologist, INSERM, Faculte de Medecine Pitie-Salpetriere

11:10 - 11:40 P.M. Electrophysiologic analysis of HSP John Wald, M.D. Clinical Assistant Professor II, Dept. of Neurology, Univ. Michigan, Ann Arbor

12:00 - 1:00 P.M. Luncheon, HSP quilt: Michele Fischer, Oak Harbor, Washington

1:00 - 1:30 P.M. TMS studies in HSP, Anke Visbeck, M.D. Doctor in Medicine, Universität Mainz, FRG

1:30 - 2:00 P.M. Neuroradiology of HSP, Peter Eldevik, M.D., Ph.D., Clinical Assoc. Professor of Radiology, Univ. Michigan, Ann Arbor

2:00 - 2:30 P.M. Diagnostic criteria and differential diagnosis, and functional disability assessment, John K. Fink, M.D., Associate Professor, Dept. of Neurology, Univ. Michigan, Ann Arbor

2:30 - 3:00 P.M. HSP classification, Tom Bird, M.D., Professor, Departments of Neurology and Medical Genetics, Univ., Washington, Seattle

3:00 - 3:10 P.M.Break

3:10 - 3:40 P.M. Neuropathology of HSP, Anders Sima, M.D., Ph.D., Professor, Department of Pathology, Wayne State University, Detroit
3:40 - 4:10 P.M. Neurobiology of spasticity and weakness, Zev Rymer, M.D., John G. Searle Professor and Director of Research, Rehabilitation Institute of Chicago, Professor of Physical Medicine and Rehabilitation, Physiology and Biomedical Engineering, Northwestern University, Chicago

4:10 - 4:40 P.M. Physical therapy of HSP, Edward Hurvitz, M.D., Assistant Professor, Physical Medicine & Rehabilitation, Univ. Michigan, Ann Arbor

4:40 - 5:-00 P.M. Medical treatment of HSP, Terry Heiman-Patterson, M.D., Professor, Department of Neurology, Hanneman Medical School, Philadelphia

5:30 - 7:00 P.M. Writing committees convene, Signs, symptoms, and diagnostic criteria of HSP

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Friday May 26 .

Session II Genetic analysis of autosomal dominant HSP Jamile Hazan, Ph.D, Session Chair

8:30 - 9:00 A.M. Pedigree analysis in HSP John K. Fink, M.D. Associate Professor, Univ. Michigan, Ann Arbor

9:00 - 9:30 A.M. Chromosome 2p linked AD-HSP: Clinical features Alexandra Durr, M.D.. INSERM, Faculte de Medecine Pitie-Salpetriere

9:30 - 10:00 A.M. Cognitive impairment in chromosome 2p linked HSP Paul McMonagle, BSc MB St. Vincent's Hospital, Dublin

10:00 - 10:10 A.M. Break

10:10 -10:40 A.M. Spastin gene Jamile Hazan, Ph.D. Genethon, Evry

11:10 -11:40 A.M. Additional spastin gene mutations Karim Ouahchi, M.D. Postdoctoral Fellow, Department of Neurology, Northwestern Univ., Chicago

11:40 A.M. - 1:00 P.M. Luncheon Film: Strumpell Lorrain Association Phillipe Grammont

1:30 - 2:00 P.M. Chromosome 8q AD-HSP: Clinical and genetic Peter Hedera, M.D. House Officer IV, Dept. of Neurology, Univ. Michigan, Ann Arbor

2:00 - 2:30 P.M. Chromosome 12 AD-HSP Evan Reid, M.D. Lecturer and Honorary Consultant, Department of Medical Genetics, University of Cambridge, Cambridge

2:30 - 3:00 P.M. Chromosome 14q linked AD-HSP genetic Caroline Patternotte, Ph.D. Genethon, Evry

3:00 - 3:10 P.M. Break

3:10 - 3:40 P.M. Chromosome 15q linked AD-HSP Shirley Rainier, Ph.D. Research Investigator, Dept. of Neurology, Univ. Michigan, Ann Arbor

3:40 - 4:10 P.M. Chromosome 19 AD-HSP Evan Reid, M.D. Lecturer and Honorary Consultant, Department of Medical Genetics, University of Cambridge, Cambridge

4:10 - 4:40 P.M Toward the identification of the SPG9 gene Dr. Marco Seri, M.D. Institute G. Gaslini, Genoa

4:40-5:10 P.M. Statistical considerations for linkage analysis in HSP Marie-Pierre Dube, Ph.D. Department of Neurology, Montreal General Hospital, Montreal

5:10-6:00 P.M. Refreshment

6:00 - 7:30 P.M. Writing committee convenes, Autosomal dominant HSP

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Saturday May 27

Session III Genetic analysis of X-linked HSP James Garbern M.D., Ph.D., Session Chair

8:30 - 9:00 A.M. Proteolipoprotein gene, Pelizeaus- Merzbacher disease, and animal models James Garbern M.D., Ph.D. Assistant Professor, Dept Neurology and Ctr Molec Medicine & Genetics, Wayne State University, Detroit

9:00 - 9:30 A.M. HSP due to proteolipoprotein gene mutations Franca Cambi, Ph.D Associate Professor, Department of Neurology, Thomas Jefferson University, Philadelphia

9:30 - 10:00 A.M. L1CAM gene mutations and complicated X-linked HSP Elena De Angelis, Doctor in Medicine Wellcome Trust Centre for Molecular Mechanisms in Disease, University of Cambridge, Cambridge

10:00 - 10:10 A.M. Break

Session IV Genetic analysis of autosomal recessive HSP Teepu Siddique, M.D., Session Chair

10:10 - 10:40 A.M. Chromosome 8p linked AR-HSP Karim Ouahchi, M.D.. Postdoctoral Fellow, Department of Neurology, Northwestern Univ., Chicago

10:40 - 11:10 A.M. Chromosome 15q linked AR-HSP Francisco Martinez-Murillo, Ph.D. Postdoctoral Fellow, Department of Genetics, Childrens National Medical Center, Washington, D.C.

11:40 A.M.- 1:00 P.M. Lunch

1:00 - 1:30 P.M. Chromosome 16q linked AR-HSP Giorgio Casari, Ph.D. Research Unit Coordinator, Telethon Inst. Genetics and Medicine, Milan

1:30-2:00 P.M. Paraplegin gene: structure and function and animal models Elena Rugarli, Ph.D. Telethon Inst. Genetics and Medicine, Milan

2:00-2:10 P.M. Break
2:10 - 2:40 P.M. Paraplegin gene analysis David Callen, Ph.D. Department of Cytogenetics and Molecular Genetics, Women's and Children's Hospital, North Adelaide

2:40 - 3:10 P.M. Mitochondrial analysis in other forms of HSP Salvatore DiMauro, M.D. Lucy G. Moses Professor, Department of Neurology, Columbia University, New York

Session V Allied spinal cord disorders Tom Bird, M.D., Session Chair

3:10 - 3:40 P.M. Primary lateral sclerosis Teepu Siddique, M.D. Professor, Department of Neurology, Northwestern University Medical School

3:40 - 4:10 P.M. X-linked spastic ataxia with sideroblastic anemia Wendy Raskind M.D., Ph.D, and Tom Bird, M.D. University of Washington, Seattle

4:10-4:40 P.M. Autosomal dominant juvenile ALS Phillip Chance, M.D. Professor, Department of Pediatrics, University of Washington

4:40 P.M. Break

Session VI HSP patient and family organizations Ms. Sharon Neumann, Session Chair

4:50 - 5:10 P.M. HSP Discussion Group Ms. Cheryl Stapley HSP Discussion Group

5:10 - 5:30 P.M. Strumpell Lorrain Association, France Mr. Phillipe Grammont Association Strumpell-Lorrain

5:30 - 5:50 P.M. Strumpell Lorrain Association, Germany Dr. Tom Wahlig, D. Pharm. President, Tom Wahlig Foundation for HSP, Tom Wahling Foundation for HSP, Muenster

6:00 P.M. - 7:30 P.M. Writing committees convene, X-linked spastic paraplegia

8:00 P.M. Dinner and Symposium summary John K. Fink, M.D.

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Family Agenda

Thursday, May 25

7:45 - Registration [Main Lobby]

8:00 - Continental Breakfast/Welcome/Announcements [Ballroom]

8:30 - Scientific Presentations Begin [Ballroom]

10:00 - Refreshment Break

10:20 - Scientific Presentations Continue [Ballroom]

NOON - Lunch [Kuenzel/Wolverine/Welker]

1:00 - Scientific Presentations Continue [Ballroom]

2:45 - Refreshment Break

3:00 - Scientific Presentations Continue (concluding at 5pm) [Ballroom]5-6:30pm - WELCOME RECEPTION FOR ALL [The University Club]

5:30 - Writing Committees Convene

5:30-7pm - Writing Committees Convene (refreshments for committees) [Kuenzel/Welker/Wolverine]

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Friday, May 26

Friday, May 26

8:00 - Continental Breakfast/Announcements/Summary of Previous Day's Proceedings [Ballroom]

8:30 - Morning Science Track:Scientific Presentations [Pendleton]

8:30 - Morning Family Track: A. What's New In Wheelchair Seating (Joe Thieme, AMIGO) [Anderson A]B. Genetic Counseling and

Family Planning (Dr. Wendy Uhlman) [Anderson B]C. Talking with Children at Risk (Dr.John Fink) [Anderson C]D. Life with a

Progressive Disorder (patient led) [Anderson D]

10:00 - Refreshment Break

10:20 - Scientific Presentations Continue [Pendleton]Family Track: A. Physical Therapy (staff) [Anderson A]B. My Spouse Has HSP (Dr. John Haskin) [Anderson B]C. My Child Has HSP (Joseph Solowiejczyk, MSW [Anderson C]D. Networking with Others (Sharon Neumann with special guest Oliver Jordan)[Anderson D]

NOON - Lunch [Kuenzel/Wolverine/Welker]

1:00 - Scientific Presentations Continue [Pendleton]Family Track: A. HSP in the Workplace (Joe Rossi, J.D.) [Anderson A]B. My Spouse Has HSP and/or Teens (Dr.Haskin available for continued discussion) [Anderson B]C. My Child Has HSP (Joe Solowiejczyk, MSW, available for continued discussion) [Anderson C]D. Rights & Resources - Part I: ADA, SSD, Medical Records Privacy, Related Topics and Legal Remedies (Jeff Gwillim, J.D. or R.Jay Hardin, J.D.) [Anderson D]

2:45 - Refreshment Break

3:00 - Scientific Presentations Continue [Pendleton]Family Track: A. Financial and Estate Planning: Special Considerations for HSP Families (Robert Parker, J.D.) [Anderson A]B. My Spouse Has HSP and/or Teens (Dr. Haskin available for continued discussion) [Anderson B]C. My Child Has HSP (Joe Solowiejczyk, MSW, available for continued discussion) [Anderson C]D. Rights and Resources - Part II: Traumatic Exacerbation of Rare Disorders and Legal Remedies (R. Jay Hardin, J.D.) [Anderson D]

5:30-7pm - Writing Committees Convene (refreshments for committees) [Kuenzel/Welker/Wolverine]

Evening Social Activities: See Lisa Chadwick-Farley or Michelle Fischer for updated information; also, listen to announcements during breakfast and lunch breaks.

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Saturday, May 27

8:00 - Continental Breakfast/Announcements/Summary of Previous Day's Proceedings [Pendleton]

8:30 - Morning Science Track:Scientific Presentations [Pendleton]
8:30 - MORNING Family Track: A. HSP in Europe - Part I (Dr. Thomas Wahlig, Germany/Philippe Grammont, France)[Anderson AB]B. Living with a Rare Disorder (Joseph Solowiejzcyk, MSW) [Anderson CD]

10:00 - Refreshment Break

10:20 - Scientific Presentations Continue [Pendleton]Family Track: A. HSP in Europe - Part II (Dr. Thomas Wahlig, Germany/Philippe Grammont, France) [Anderson AB]B. Living with a Rare Disorder (continued as needed) (Joseph Solowiejczyk, MSW) [Anderson CD]

NOON - Lunch Buffet[The University Club]

1:00 - Scientific Presentations Continue [Pendleton]Family Track: A. HSP Community - Part I: Where we've been, where we are, and where do we go from here? All are encouraged to participate in this overview and planning session. (Facilitators: Lisa Chadwick-Farley/Sharon Neumann) [Anderson ABCD]

2:45 - Refreshment Break

3:00 - Scientific Presentations Continued [Pendleton]Family Track: HSP Community - Part II: Where we've been, where we are, and where do we go from here? (con't) (Chadwick-Farley/Neumann) [Anderson ABCD]

5:30-7pm - Writing Committees Convene (Refreshments for committee) [Kuenzel/Welker/Wolverine]

7:30 - Banquet - Please join us in the Ballroom for an evening celebration of (H)ope, (S)cience and (P)rogress and to honor those who have given so much to the HSP community!Results of Detroit Red Wing auction to be announced, raffle winners will be drawn and other surprises await ...A $50/person donation at the door to "U of M for HSP Research" to offset the cost of this special banquet event is suggested but not required.

All Three Days of Symposium !!! HSP Awareness Quilt Project and Sponsor Displaysopen all day -- stop by and visit anytime!!! Raffle tickets available throughout conference at HSP Awareness Quilt display; all raffle proceeds go toward HSP symposium expenses. [Pond ABC] Wheelchair Tune-Ups available at AMIGO vendor space courtesy of Joe Thieme. [Pond ABC]DAYCARE and activities for children are available from 8am to 5pm so that parents may enjoy attending workshops. Permission slips may be necessary for certain off-site activities (i.e., museums, botanical gardens, etc.) See Sharon Neumann or Lisa Chadwick-Farley for more information.) [Blain]SPACE is available for unscheduled meetings. If needed, see Sharon Neumann for availability. [Tappan] Need a Break??? Visit one of the local museums, botanical gardens or other points of interest. Stop by the information center at The Michigan Union or ask Sharon, Lisa or Michelle for suggestions. You might try one of the twelve pool tables in the activities room within the Michigan Union -- or if there is enough interest, perhaps we could organize a pool tournament ... plenty to do ... plenty to see ... plenty of friends around to share good times !!! Have an Announcement or Special Need? Contact Lisa or Sharon.

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 Participants

Rita Ayyangar, M.B., B.S.
Lecturer and Research Fellow, Physical Medicine & Rehabilitation Department
University of Michigan

Tom Bird, M.D.
Professor, Departments of Neurology and Medical Genetics
University of Washington
VA Medical Center

David Callen, Ph.D.
Department of Cytogenetics and Molecular Genetics
Women's and Children's Hospital of Adelaide

Franca Cambi, M.D.
Associate Professor, Department of Neurology
Thomas Jefferson University

Giorgio Casari, Ph.D.
Research Unit Coordinator
Telethon Institute of Genetics and Medicine

Phillip Chance, M.D.
Professor, Department of Pediatrics
University of Washington School of Medicine
Division of Genetics and Congenital Defects

Paula Coutinho, M.D.
Professor
Hospital S. Sebastião
Santa Maria da Feira
Portugal

Elena De Angelis, Ph.D.
Doctor in Medicine
Wellcome Trust Centre for Molecular Mechanisms in Disease, CIMR
University of Cambridge

Salvatore DiMauro, M.D.
Lucy G. Moses Professor, Department of Neurology
4-420 College of Physicians and Surgeons
.

Marie-Pierre Dube, Ph.D.
Department of Neurology
Montreal General Hospital

Alexandra Durr, M.D.
Praticien Hospitalier
Federation de Genetique et INSERM U289
Groupe Hospitalier Pitie-Salpetriere

O. Petter Eldevik, M.D., Ph.D.
Clinical Associate Professor of Radiology
University of Michigan

John K. Fink, M.D.
Associate Professor
University of Michigan

Michele Fischer

Bertrand Fontaine, M.D.
Praticien Hospitalier Universitaire
Federation de Neurologie and INSERM CJF 9711
Groupe Hospitalier and Faculte de Medecine Pitie-Salpetriere

James Garbern, M.D., Ph.D.
Assistant Professor, Dept Neurology and Center Molecular Medicine & Genetics
Wayne State University

Pete Gaskell, P.A.
Duke University
Physician Associate
Section of Medical Genetics, Department of Medicine

Phillipe Grammont
Founder and Honorary President
Strumpell-Lorrain Association

Djamel Grid, M.D.
Neurologist
GENETHON

Jeff Gwillim, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law

R. Jay Hardin, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law

John Haskin, Ph.D.

Jamile Hazan, Ph.D.
GENETHON

Peter Hedera, M.D.
Fellow in Medical Genetics
Department of Pediatrics
University of Michigan

Terry Heiman-Patterson, M.D.
Professor, Department of Neurology
Department of Neurology, Hahnemann University Hospital

Edward Hurvitz, M.D.
Assistant Professor, Physical Medicine & Rehabilitation
University of Michigan

Oliver Jordan
Philadelphia Convention Center
Philadelphia, PA
Francisco Martinez-Murillo, Ph.D.
Postdoctoral Fellow, Department of Genetics
Research Center for Genetic Medicine, Children's National Medical Center

Joan Mathay, R.N.

Paul McMonagle, BSc MB, MRCPI
Dept of Neurology,
St Vincent's University Hospital,

Martha Nance, M.D.
Clinical Assistant Professor, Department of Neurology
Park Nicollet Clinic

Sharon Neumann, L.A.
Chair, Michigan Chapter of National Organization for Rare Disorders

Karim Ouahchi, M.D.
Postdoctoral Fellow, Department of Neurology
Northwestern University Medical School

Robert Parker, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law

Caroline Patternotte, Ph.D.

Shirley Rainier, Ph.D.
Research Investigator, Department of Neurology
University of Michigan

Wendy Raskind, M.D., Ph.D.
Professor, Department of Internal Medicine
University of Washington
VA Medical Center

Evan Reid, M.D.
Lecturer and Honorary Consultant, Department of Medical Genetics
University of Cambridge

Joe Rossi, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law

Elena Rugarli, M.D.
Telethon Institute of Genetics and Medicine

Zev Rymer, M.D., Ph.D.
John G. Searle Professor and Director of Research, Rehabilitation Institute of Chicago, Professor of Physical Medicine and
Rehabilitation, Physiology and Biomedical Engineering
Northwestern University

Marco Seri, M.D.
Laboratory of Molecular Genetics
Institute G. Gaslini

Teepu Siddique, M.D.
Professor, Department of Neurology
Northwestern University Medical School
Department of Neurology

Anders Sima, M.D., Ph.D
Professor, Department of Pathology
Wayne State University

Joseph Solowiejczyk, M.S.W.
Instructor
Columbia University
School of Nursing

Cheryl Stapley

Haluk Topaloglu, M.D.
Professor of Pediatrics and Neurology
Hacettepe Children's Hospital

Wendy Uhlmann, B.A., M.S.
Genetic Counselor, Internal Medicine and Clinical Instructor, Human Genetics
University of Michigan

Anke Visbeck, M.D.
Doctor in Medicine
Department of Neurology, University of Mainz

Tom Wahlig, D. Pharm
President, Tom Wahlig Foundation for HSP

John Wald, M.D.
Clinical Assistant Professor II, Neurology Department
University of Michigan

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Last updated April 15, 2011