The First International Symposium for Hereditary Spastic Paraplegia

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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] (SPONSOR: __________________) [5:30 - Writing Committees Convene - See next page.]

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 DISPLAYS open 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
1D204 UH/Box 0042
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0042
TEL: 734-936-7200
FAX: 734-936-7815
Email: Ayyangar@umich.edu

Tom Bird, M.D.
Professor, Departments of Neurology and Medical Genetics
University of Washington
VA Medical Center
1660 S. Columbian Way, Geriatrics (182B)
Seattle, WA 98108-1532
TEL: 206-764-2308
FAX: 206-764-2569
Email: tomnroz@u.washington.edu

David Callen, Ph.D.
Department of Cytogenetics and Molecular Genetics
Women's and Children's Hospital of Adelaide
72 King William Rd.
North Adelaide, SA
Australia SA 5006
TEL: 618-8204-7342
Email: dcallen@medicine.adelaide.edu.au

Franca Cambi, M.D.
Associate Professor, Department of Neurology
Thomas Jefferson University
1020 Locust St. #391
Philadelphia, PA 19107
TEL: 215-503-1530
FAX: 215-923-7747
Email: franca.cambi@mail.tju.edu

Giorgio Casari, Ph.D.
Research Unit Coordinator
Telethon Institute of Genetics and Medicine
Via Olgettina 58
Milan, Italy 20132
Email: casari@tigem.it

Phillip Chance, M.D.
Professor, Department of Pediatrics
University of Washington School of Medicine
Division of Genetics and Congenital Defects
Box 356320
Seattle, WA 98195-0001
TEL: 206-616-3787
FAX: 206-543-3184
Email: pchance@u.washington.edu

Paula Coutinho, M.D.
Professor
Hospital S. Sebastião
Santa Maria da Feira
Portugal
Email: pcoutinho@hospitalfeira.min-saude.pt

Elena De Angelis, Ph.D.
Doctor in Medicine
Wellcome Trust Centre for Molecular Mechanisms in Disease, CIMR
University of Cambridge
Addenbrooke's Hospital, Hills Road
Cambridge, UK CB2 2XY
TEL: (01223) 331756
FAX: (01223)331206
Email: ed214@mole.bio.cam.ac.uk

Salvatore DiMauro, M.D.
Lucy G. Moses Professor, Department of Neurology
4-420 College of Physicians and Surgeons
630 West 168th St.
New York, NY 10032
TEL: 212-305-1662
FAX: 212-305-3986
Email: sd12@columbia.edu

Marie-Pierre Dube, Ph.D.
Department of Neurology
Montreal General Hospital
Montreal, Canada PQ H3G 1A4
TEL: 514-934-8265
Email: mp.dube@utoronto.ca

Alexandra Durr, M.D.
Praticien Hospitalier
Federation de Genetique et INSERM U289
Groupe Hospitalier Pitie-Salpetriere
47 Bd Hopital
Paris, France 75013
e-mail durr@ccr.jussieu.fr
TEL: 33142162182
FAX: 33144243658

O. Petter Eldevik, M.D., Ph.D.
Clinical Associate Professor of Radiology
University of Michigan
UH-B2B311/Box 0030
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0030
TEL: 734-936-6905
FAX: 734 764 2412
Email: eldevik@umich.edu

John K. Fink, M.D.
Associate Professor
University of Michigan
5214 CCGCB/Box 0940
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0940
TEL: 734-936-3087
FAX: 734-936-9220
Email: jkfink@umich.edu

Michele Fischer
180 W. Tulagi Ave.
Oak Harbor, WA 98278

Bertrand Fontaine, M.D.
Praticien Hospitalier Universitaire
Federation de Neurologie and INSERM CJF 9711
Groupe Hospitalier and Faculte de Medecine Pitie-Salpetriere
105 Bd Hopital
Paris, France 75013
TEL: 33140778118
FAX: 33140778117
Email: bertrand.fontaine@psl.ap-hop-paris.fr

James Garbern, M.D., Ph.D.
Assistant Professor, Dept Neurology and Center Molecular Medicine & Genetics
Wayne State University
Room 3205 Elliman Bldg.
421 E. Canfield
Detroit, MI 48201
Telephone: (313) 577 2648
Fax: (313) 577 7552
Email: j.garbern@wayne.edu

Pete Gaskell, P.A.
Duke University
Physician Associate
Section of Medical Genetics, Department of Medicine
3100 Tower Blvd., STE 1401
Box 3468 Medical Center
Durham, NC 27710
TEL: 919-402-2541
Email: pete@chg.mc.duke.ed

Phillipe Grammont
Founder and Honorary President
Strumpell-Lorrain Association
9 bis, rue Fabre
Besancon, France 25000
Telephone: 33 3 81 83 52 40
Fax: 33 3 81 83 52 40
Email: asl.spastic@wanadoo.fr

Djamel Grid, M.D.
Neurologist
GENETHON -CNRS URA 1923
1bis rue de l'Internationale
Paris, France BP60-91002
TEL: (33)0169472573
FAX: (33)0145803736
Email: grid@genethon.fr

Jeff Gwillim, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law
100 Cith Centre Plaza Bldg
202 E. State St.
P.O. Box 848
Traverse City, MI 49685-0848
TEL: 231-929-4878
FAX: 231-929-4182

R. Jay Hardin, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law
100 Cith Centre Plaza Bldg
202 E. State St.
P.O. Box 848
Traverse City, MI 49685-0848
TEL: (231) 929-4878
FAX: (231) 929-4182

John Haskin, Ph.D.
South Garfield Avenue
Traverse City, MI 49684

Jamile Hazan, Ph.D.
GENETHON
1bis rue de l'Internationale
Paris, France BP60-91002
TEL: (33)0169472573
FAX: (33)0145803736

Peter Hedera, M.D.
Fellow in Medical Genetics
Department of Pediatrics
University of Michigan
5214 CCGCB/Box 0940
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0940
TEL: 734-936-3087
FAX: 734-936-9220
Email: phedera@umich.edu

Terry Heiman-Patterson, M.D.
Professor, Department of Neurology
Department of Neurology, Hahnemann University Hospital
Mail Stop 960
219 N. Broad St.
Philadelphia, PA 19107
TEL: 215-762-7000
FAX: 215-762-8634
Email: heiman@drexel.edu

Edward Hurvitz, M.D.
Assistant Professor, Physical Medicine & Rehabilitation
University of Michigan
1D204-UH/Box 0042
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0042
TEL: 734-936-7200
ehurvitz@umich.edu

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
111 Michigan Ave., N.W.
Washington, D.C. 20010
TEL: 202-884-6094
FAX: 202-884-6014
Email: fmurillo@cnmc.org

Joan Mathay, R.N.
5214 CCGCB Box 0940
1500 E. Medical Center Dr.
Ann Arbor Michigan 49109-0940
TEL: (734) 936-3087
FAX: (734) 936-9220
Email: jmathay@umich.edu

Paul McMonagle, BSc MB, MRCPI
Dept of Neurology,
St Vincent's University Hospital,
Elm Park,
Dublin 4,
Ireland.
Tel: 00353 1 2094821
Fax: 00353 1 2094965
Email (Work): p.mcmonagle@st-vincents.ie

Martha Nance, M.D.
Clinical Assistant Professor, Department of Neurology
Park Nicollet Clinic
6490 Excelsior Blvd., Suite E500
Minneapolis, MN 55426-4770
TEL: 952-993-1047
FAX: 952-993-2701
Email: mnance@wavefront.com

Sharon Neumann, L.A.
Chair, Michigan Chapter of National Organization for Rare Disorders
100 City Centre Plaza Building
202 E. State Street, P.O. Box 848
Traverse City, MI 49685-0848
TEL: 231-486-4505
FAX: 231-929-4182
Email: sneumann@shrr.com

Karim Ouahchi, M.D.
Postdoctoral Fellow, Department of Neurology
Northwestern University Medical School
303 E. Chicago Ave.
Chicago, IL 60611-3008
TEL: 312-503-2446
FAX: 312-908-0865
Email: k-ouahchi@nwu.edu

Robert Parker, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law
100 Cith Centre Plaza Bldg
202 E. State St.
P.O. Box 848
Traverse City, MI 49685-0848
TEL: 231-929-4878
FAX: 231-929-4182

Caroline Patternotte, Ph.D.

Shirley Rainier, Ph.D.
Research Investigator, Department of Neurology
University of Michigan
5214 CCGCB/Box 0940
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0940
TEL: 734-936-3087
FAX: 734-936-9220
Email: srainier@umich.edu

Wendy Raskind, M.D., Ph.D.
Professor, Department of Internal Medicine
University of Washington
VA Medical Center
1660 S. Columbian Way, Geriatrics (182B)
Seattle, WA 98108-1532
TEL: 206-764-2308
FAX: 206-764-2569

Evan Reid, M.D.
Lecturer and Honorary Consultant, Department of Medical Genetics
University of Cambridge
Addenbrooke's Hospital
Cambridge, UK CB2 2XY
TEL: 01223 336905 or 01223 216446
Email: ereid@hgmp.mrc.ac.uk

Joe Rossi, J.D.
Smith, Haughey, Rice & Roegge
Attorneys at Law
100 Cith Centre Plaza Bldg
202 E. State St.
P.O. Box 848
Traverse City, MI 49685-0848
TEL: 231-929-4878
FAX: 231-929-4182

Elena Rugarli, M.D.
Telethon Institute of Genetics and Medicine
via Olgettina 58
Milan, Italy 20132
TEL: 39-02-21550233
FAX: 39-02-21560220
Email: rugarli@tigem.it

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
Room 1406
345 East Superior
Chicago, IL 60611
TEL: 312-238-3919
FAX: 312-238-2208
Email: w-rymer@nwu.edu

Marco Seri, M.D.
Laboratory of Molecular Genetics
Institute G. Gaslini
L.go G. Gaslini n. 5
Genoa, Italy I-16148
TEL: 39-010-5636532
FAX: 39-010-3779797
Email: genseq@tin.it

Teepu Siddique, M.D.
Professor, Department of Neurology
Northwestern University Medical School
Department of Neurology, Tarry 13-715
303 E. Chicago Ave.
Chicago, IL 60611-3093
TEL: 312-503-4737
FAX: 312-908-0865
Email: t-siddique@nwu.edu

Anders Sima, M.D., Ph.D
Professor, Department of Pathology
Wayne State University
9374 Scott Hall
540 E. Canfield
Detroit, MI 48202
TEL: 313-577-1150
FAX: 313-577-0057
Email: asima@med.wayne.edu

Joseph Solowiejczyk, M.S.W.
Instructor
Columbia University
School of Nursing
Georgian 617W, 168 St.
TEL: 212-305-3418

Cheryl Stapley
2107 Worchester Drive
Salt Lake City, UT 84121
TEL: 801-366-7348
FAX: 801-328-7348
Email: cheryl.stapley@URS.org

Haluk Topaloglu, M.D.
Professor of Pediatrics and Neurology
Hacettepe Children's Hospital
Ankara, Turkey 06100
TEL: 90 532 234 12 26
FAX: 90 312 310 62 62
Email: htopalog@gen.hun.edu.tr

Wendy Uhlmann, B.A., M.S.
Genetic Counselor, Internal Medicine and Clinical Instructor, Human Genetics
University of Michigan
4301 MSRB III
Ann Arbor, MI 48109-0638
TEL: 734-763-2532
Email: wuhlmann@mmg.im.med.umich.edu

Anke Visbeck, M.D.
Doctor in Medicine
Department of Neurology, University of Mainz
Langenbeckstr. 1
Mainz, Germany 55101
TEL: 49-6131-175273
FAX: 49-6131-173271
Email: visbeck@neurologie.klinik.uni-mainz.de

Tom Wahlig, D. Pharm
President, Tom Wahlig Foundation for HSP
Veghestrasse 22
Muenster, Germany 28149

John Wald, M.D.
Clinical Assistant Professor II, Neurology Department
University of Michigan
1920 TC/Box 0316
1500 E. Medical Center Dr.
Ann Arbor, MI 48109-0316
TEL: 734-936-8586
Email: johnwald@umich.edu

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Last updated June 19, 2007