| Mailing Address
PO Box 49 401 Madison Ave Suite B Ft. Atkinson, WI 53538 |
Phone / Email
Toll Free: 1-877-CURE-NPC (1-877-287-3672) Office: 1-920-563-0930 Fax : 1-920-563-0931 Email: nnpdf @idcnet.com |
Send Donations To
PO Box 310 Ft. Atkinson, WI 53538 Make checks payable to the National Niemann-Pick Disease Foundation |
| Board of Directors | |||
|---|---|---|---|
| Hunt Ozmer, Chairman |
5971 Saddleridge Rd
Roanoke, VA 24018 |
Home Ph: (540) 774-0944
ozmer@verizon.net |
|
| Douglas Pease, Vice Chairman |
321 N. Bernadotte St
New Orleans, LA 70119 |
Ph: (504) 304-3733
webmaster@nnpdf.org |
|
| Wayne Moore, Treasurer |
2525 Big Spring Drive
Fort Worth, TX 76120 |
Ph: (817) 469-6018
carlwmoore@hotmail.com |
|
| Tammy Vaughn. Secretary |
RR#1
Durham, Ontario Canada N0G 1R0 |
Ph: (519) 369-2837
TammyV@butterball.ca |
|
Rhonda Brown-Kehoe, Director-at-Large
|
140 Evans Rd
|
Chepachet, RI 02814
Ph: (401) 949-2459
|
slainte23@msn.com | |
Stephanie Cortes, Director-at-Large
| 16866 Kingsbury St #112
|
Granada Hills, CA 01344
Ph: (818) 363-9451
|
slyn123@aol.com
|
|
| Tanya Jackson, Director-at-Large |
44 Stones Throw Drive
Hattiesburg, MS 39402 |
Ph: (601) 268-2540
gjackson@forrestgeneral.com |
|
| Melissa King, Director-at-Large |
57 Faison Dr.
Eufaula, AL 36027 |
Ph: (334) 687-7753
jimmynmelissa@aol.com |
|
| Holly Roberts, Director-at-Large |
110 Hearthstone Way
Hanover, MA 02339 |
Ph: (781) 826-4056
hrober97@aol.com |
|
| Nancy Sullivan, Director-at-Large |
2139 Quaethem Dr
Chesterfield, MO 63005 |
Ph: (636) 537-3743
nancysulli@msn.com |
|
| Barbara Vorpahl, Director-at-Large |
N1590 Fairview Lane
Ft. Atkinson, WI 53538 |
Ph: (920) 563-8677
Fax: (920) 563-5246 bvorpahl@charter.net |
|
| Staff and Support | |||
| Nadine Hill, Director of Family Support Services |
PO Box 49
415 Madison Ave Ft. Atkinson, WI 53538 |
Ph: (877) 287-3672
Fax: (920) 563-0931 nnpdf@idcnet.com |
|
|
Cate Walsh Vockley, MS, CGC
National Niemann-Pick Coordinator (funded by NNPDF) |
Medical Genetics
Children’s Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh, PA 15213 |
Ph: (412) 692-7349
catherine.walshvockley@chp.edu |
|
|
Catherine Kendall, MSW, LICSW
National Niemann-Pick Type C Family Counselor (funded by JLMRF) |
University of Washington Medical Center
Division of Neurogenetics Box 357720 1959 NE Pacific Street Seattle, WA 98195 |
Ph: 1-888-264-4372 or (206) 221-5390
ckendall@u.washington.edu |
|
|
Darleen Vecchio
OGT-918 Clinical Trial Coordinator (funded by Actelion) |
Columbia University
Department of Neurology Division of Pediatric Neurology 180 Fort Washington Ave. 5th floor, Room 548 New York, NY 10032 |
Ph: (212) 305-4136
Fax: (212) 305-1253 dv2009@columbia.edu |
|
|
Rhonda Brown-Kehoe,
Chair of the Support Services Committee | See above for contact information | ||
|
Ed Fabianski
Support Contact for Germany |
Ph: 0049-7159-43969
efabianski@aol.com |
||
|
Tammy Vaughn
Support Contact for Canada | See above for contact information | www.nnpdf.ca | |
|
Stephanie Cortes
Support Contact for Niemann-Pick Type B | See above for contact information | ||
|
John Taft
Support Contact for Niemann-Pick Type A | 430 Hollywood Dr
Monroe, MI 48162 |
Ph: (734) 242-0864
john@taftrealestate.com jtaft@foxberry.net |
|
The Scientific Advisory Board members are all volunteers whose role is to provide technical and scientific evaluations of research grant applications to the Foundation. All of the SAB members currently lead Niemann-Pick research teams. Questions about research and medical matters should be directed to Staff and Support listed above. |
|||
|
Steven U. Walkley, Ph.D., Chair
Department of Neuroscience Sidney Weisner Laboratory of Genetic Neurological Disease Rose F. Kennedy Center Albert Einstein College of Medicine |
1410 Pelham Parkway South
Bronx, NY 10461 |
Ph: (718) 430-4025
Fax: (718) 430-8821 walkley@aecom.yu.edu Website: Stephen U. Walkley |
|
|
Robert J. Desnick, M.D., Ph.D.
Chair, Department of Human Genetics Mount Sinai School of Medicine |
East Building, Room 14-34
Fifth Avenue and 100th Street New York, NY 10029 |
Ph: (212) 659-6700
Fax: (212) 360-1809 robert.desnick@mssm.edu Website: Robert J. Desnick |
|
|
Yiannis A. Ioannou, Ph.D.
Associate Professor, Human Genetics, Gene Therapy and Molecular Medicine Mount Sinai School of Medicine |
Box 1498, East Building, Rm 14-70A
One Gustave L. Levy Place New York, N.Y. 10029 |
Ph: (212) 659-6720
Fax: (212) 348-3605 yiannis.ioannou@mssm.edu |
|
|
Laura Liscum, Ph.D.
Professor of Physiology Tufts University School of Medicine |
136 Harrison Avenue
Boston, MA 02111 |
Ph: (617) 636-6945
Fax: (617) 636-0445 laura.liscum@tufts.edu Website: Liscum Laboratory |
|
|
Daniel S. Ory M.D.
Assistant Professor of Medicine Center for Cardiovascular Research Washington University School of Medicine |
Box 8086
660 S. Euclid Ave. St. Louis, MO 63110 |
Ph: (314) 362-8737
Fax: (314) 362-0186 dory@im.wustl.edu |
|
|
Marc C. Patterson, M.D.
Director of Pediatric Neurology, Department of Neurology, Neurological Institute of New York and Babies and Children's Hospital of New York; and Professor of Clinical Neurology and Clinical Pediatrics, College of Physicians and Surgeons of Columbia University. |
The Neurological Institute, #113
710 West 168th Street New York NY 10032 |
Ph: (212) 305-6038
Fax: (212) 305-7036 mpatterson@neuro.columbia.edu |
|
|
Peter Pentchev, Ph.D.
National Institutes of Diabetes and Digestive and Kidney Diseases Laboratory of Cell Biochemistry and Biology |
Section of Lipid Cell Biology
Bldg. 8 Room 427 Bethesda, Maryland 20892 |
Ph: 301-496-2050
Fax: 301-402-0723 PeterP@intra.niddk.nih.gov |
|
|
Edward H. Schuchman, Ph.D.
Professor and Vice Chairman for Research Dept of Human Genetics Member, Institute for Gene Therapy and Molecular Medicine Mount Sinai School of Medicine |
1425 Madison Avenue, Rm. 14-20A, Box 1498
New York, NY 10029 |
Ph: 212-659-6711
Fax: 212-849-2447 Edward.Schuchman@mssm.edu Website: Edward.Schuchman |
|
|
Stephen Sturley, Ph.D.
Assistant Professor Institute of Human Nutrition Columbia University College of Physicians and Surgeons |
630 W168th St.
Presbyterian Hospital 15 East New York, NY 10032 |
Ph: (212) 305-6304
Fax: (212) 305-3079 sls37@columbia.edu Website: Stephen L. Sturley |
|
|
Jean Vance, PhD
Professor, Division of Endocrinology University of Alberta |
332, Heritage Medical Rsch
Edmonton, AB, Canada , T6G 2S2 |
Ph: (780) 492-7250
Fax: (780) 492 3383 jean.vance@ualberta.ca Website: Jean Vance |
|
|
Marie Vanier, MD, PhD
INSERM Research Director Laboratoire Fondation Gillet-Merieux |
Bat 3B, Centre Hospitalier Lyon-Sud
F-69495 Pierre-Benite, France |
Ph: 33 4 78 86 16 03
Fax: 33 4 78 50 54 94 vanier@lyon.inserm.fr |
|
| Other Contacts | |||
|
Jim Green
Chair of the Liaison Committee |
Kingslaw House
East Brae East Wemyss Fife KY1 4RS Scotland UK |
Ph: 011-44-1592-713409
jimgee@zetnet.co.uk |
|
|
Susan Green
Chair of the Research Committee |
Kingslaw House
East Brae East Wemyss Fife KY1 4RS Scotland UK |
Ph: 011-44-1592-713409
susangee@zetnet.co.uk |
|
|
Cynthia MacLean, CPA
NNPDF Financial Advisor |
3571 S. Ceylon Way
Aurora, CO 80013 |
Ph: (303) 680-7933
cynthiamaclean@comcast.net |
|
|
Stephen Mendel
NNPDF Legal Advisor |
2211 Norfolk St. Ste 620
Houston, TX 77098 |
Ph: (281) 759-3213
steve@mendellawfirm.com |
|
|
Janice Shearer
NNPDF Historian |
2219 Fairview Lane
Searcy, AR 72143 |
Ph: (501) 728-4458
shearerrj@simple.net |
|