PWSA of MD, VA, and DC Resource Directory
February 2004
University
of
Maryland
Medical System
Prader-Willi
Syndrome
Center
Mt.
Washington
Pediatric Hospital
1708 West
Rogers Ave.
Baltimore
,
MD
(410) 367-2222
Staff:
Dr.
Debra Counts, pediatric endocrinologist
.
Nutrition
consultations as needed. Referrals
to other specialists as needed. The center
schedules PWS patients one day each month.
Dr.
Counts’ office:
University of Maryland Hospital
22 S. Greene St
.
Baltimore
,
MD
21201
(410) 328-3410
The
Kennedy Krieger Institute
Prader-Willi Clinic
707 N. Broadway
Baltimore
MD
21205
For information or to schedule
appointments, call (443) 923-2740.
The clinic sees patients quarterly, on the 5th Tuesday of the month.
Staff: Dr.
Ann Scheimann, pediatric gastroenterologist
Nutrition, speech,
behavior/psychology consultations available on clinic days
. Referrals to
other specialists, as needed
(Note:
To be seen in either of the above PWS programs, patients must have
documentation of the genetic diagnosis of PWS.)
The
Children’s Institute
6301 Northumberland St
.
Pittsburgh
,
PA
15217
(412) 521-9000
Program
director: Ken Smith
(Formerly known as The Rehabilitation Institute, this
facility is well known for its inpatient crisis intervention program for
children and adults with PWS. It also features an outpatient clinic for PWS.)
Wake
Forest
University
Baptist
Medical
Center
Winston-Salem
,
NC
(336) 716-2899
Clinic
coordinator: Carla Johnson
The
following centers are known to work with many individuals with PWS.
Children’s
National
Medical
Center
Cynthia Tifft, M.D., Ph.D. (Chair)
Kenneth Rosenbaum, M.D.
Dept. of Medical Genetics
111 Michigan Ave. NW
Washington
,
DC
20010
(202) 884-2187
University
of
Virginia Health
System
Dept. of Pediatrics
P.O. Box
800386
Charlottesville
,
VA
22908-0386
(804) 924-2665
Genetic counselors: Patricia Allinson,
Carolyn Ohle
Karen Armour, M.D.
Sinai
Hospital
of
Baltimore
Pediatric endocrinology
2435 West Belvedere Ave., Suite 34
Hoffberger Professional Bldg.
Baltimore
,
MD
21215-5271
(410) 601-8331
Audrey Austin, M.D.
Children’s
National
Medical
Center
Dept. of Endocrinology
111 Michigan Ave. NW
Washington
,
DC
20010
(202) 884-2121
Gail Blandin, M.D.
2041 Georgia Ave., N.W.
Washington
,
DC
20060
(202) 945-1263
(serves Kaiser HMO)
Debra Counts, M.D.
Univ. of
Maryland
Hospital
22 S. Greene St., Suite N5E23
Baltimore
,
MD
21201
(410) 328-3410
Prader-Willi
Syndrome
Center
Mt.
Washington
Pediatric Hospital
1708 West
Rogers Ave.
Baltimore
,
MD
(410) 367-2222.
Leslie
Plotnick, M.D.
Johns
Hopkins
Hospital
600 North Wolfe St
.
Baltimore
,
MD
21287
(410) 955-8964
(410) 955-6463
Barry
Reiner, M.D.
3001 South Hanover St
.
Suite NA –159
Baltimore
,
MD
21225
(410) 347-3405
and
Columbia
Medical Plan
Two Knoll North Dr
.
Columbia
,
MD
21045
(410) 997-8940
Other
physicians now using growth hormone for PWS:
(These
names provided by Rhona Shapiro, R.N., MSN, a nurse educator with Innovex, Inc.)
Dr. Gary Wand
Johns Hopkins (adult & adolescent endocrinology):
Suite
863
Ross
Building
Baltimore
,
Md
21287
410- 955- 7225
Dr. Shehzad
Basaria,
Dr.
Roberto Salvatori
Johns Hopkins (adult & adolescent endocrinology):
1830 E. Monument St
Suite
333
Baltimore
,
Md
21287
(410) 955-3921
Dr. Ann Scheimann
(pediatric gastroenterology)
Kennedy Krieger
Institute
Prader-Willi Clinic
707 N. Broadway
Baltimore
MD
21205
(443) 923-2740.
Dr. Helena
Rodbard (adult & adolescent endocrinology)
15001 Shady Grove Road, suite 320
Rockville
Md
20850
and
5410 McKinley St
Bethesda
,
Md
20814
301- 251- 0909 for both offices
Dr. Dwight F.
Matthias (adult & pediatric endocrinology)
Assistant Professor of Medicine
Eastern
Virginia
Medical
School
855
W. Brambleton Ave
Norfolk
,
VA
23510
757- 446- 5970
Ted Abernathy M.D.
Virginia Physicians, Inc.
8719 Forest Hill Ave.
Richmond
,
VA
23235
(804) 320-7161
Jon
Farber, M.D.
(developmental)
Alexandria
and Lake Ridge
Pediatrics Groups
4660 Kenmore Ave.
Alexandria
,
VA
22304
(703) 212-6600
Marcia Schwartz, M.D.
Columbia
Medical Plan
Two Knoll North Dr
.
Columbia
,
MD
21045
(410) 997-8940
Michael
Sherlock, M.D.
Suite
27
,
1205 York Rd.
Lutherville
,
MD
21093
(410) 321-8822
Stephanie Sullivan, M.D.
Hopkins
Pediatrics &
Assoc.
1212 McConville Road
Lynchburg
,
VA
24501
(804) 237-8886
J.
Ronald Walcher, M.D.
Kennedy-Krieger
Institute (and private practice)
7401 Osler Dr
.
Towson
,
MD
21204
(410) 321-7700
Guy
Fiscus, M.D.
500 Memorial Ave.
Cumberland
,
MD
21502
(301) 724-8665
Ann Scheimann, M.D.
The Kennedy Krieger Institute
Prader-Willi Clinic
707 N. Broadway
Baltimore
MD
21205
(443) 923-2740.
Kathryn Camp, R.D., C.S.P.
(pediatric nutritionist)
Walter
Reed
Army
Medical
Center
Department of
Pediatrics
6825 16th St., N.W.
Washington
,
DC
20307
(202) 782-1962
Faith Hicks, R.D. (pediatric
nutritionist)
Prader-Willi
Syndrome
Center
Mt.
Washington
Pediatric Hospital
1708 West
Rogers Ave.
Baltimore
,
MD
(410) 367-2222.
Elizabeth Shipley-Moses (nutritionist)
Kaiser HMO
Katherine Alter, M.D.
National
Rehabilitation
Hospital
102 Irving St., N.W.
Washington
DC
20010
(202) 877-1000
and
(301) 654-9160
Peggy
A. Hanson, M.D.
Professor of Neurology and Pediatrics
Georgetown
University
Medical
Center
3800 Reservoir Rd., N.W.
Washington
,
DC
20007-2197
(202) 687-8785
Rebecca
Ickord, M.D.
Johns
Hopkins
Harvey
811
600 North Wolfe St
.
Baltimore
,
MD
21287-8811
(410) 955-3805
Edwin Myer, M.D.
MCV Physicians
Medical
College
of
Virginia
Richmond
,
VA
(804) 828-0442
John
Herzenberg, M.D.
University
of
Maryland
Medical System
Kernans
Baltimore
,
MD
(410) 448-2500
Paul
McAffee, M.D.
Director, The
Scoliosis and
Spine
Center
Towson
Orthopaedic
Associates, P.A.
7505 Osler Dr., Suite 104
Towson
,
MD
21204
(410) 337-8888 or
1-800-678-4671
Paul D. Sponseller, M.D.
Johns
Hopkins
University
601 North Caroline St. #5212
Baltimore, MD 21287
410-955-6784 (appts.)
410-955-3137 (office)
Laura
Tosi, M.D.
Department of
Pediatric Orthopaedic Surgery
Children’s
National
Medical
Center
111 Michigan Ave., N.W.
Washington
,
DC
200102970
(202) 884-2112
Steven Tuck, M.D.
Orthopedics
9715 Medical Center Drive
Rockville
,
MD
(301) 340-9200
Shriners
Hospital
3551 North Broad St
.
Philadelphia
,
PA
19140
(800) 237-5055
(800) 281-4050
(appointments, applications)
(Shriners is a 59-bed pediatric orthopedic hospital providing a
specialized medical and rehabilitation services at no charge to children with
orthopedic problems or spinal cord injuries. Provides treatment for scoliosis,
hip disorders, leg-length discrepancies, and more. Services include surgery,
orthotics, rehabilitation, radiology, therapy, etc.)
Foot
orthotics:
Greg Banks
BIO-LAB
Bio Prosthetic-Orthotic Laboratory, Inc.
41654 John Mosby Hwy.
Aldie
,
VA
20105
(703) 471-8555
(offices in
Arlington
,
Va.
, and
Wheaton
,
Md.
)
Cindy Fox
Orthotic Solutions
2802 Merrilee Dr., Suite 100
Fairfax
,
VA
22031
(703) 849-9200
Scoliosis
braces:
Luke Stikeleather
Orthotic Solutions
2802 Merrilee Dr., Suite 100
Fairfax
,
VA
22031
(703) 849-9200
Fitting shoes for
orthotics:
Ed Jurgrau
Shoe Train Ltd.
Cabin
John
Shopping Center
11325
Seven Locks Rd.
Potomac
,
MD
20854
(301) 299-9688
(Ed has fitted many kids who wear orthotics and provides great,
personalized service at no extra charge.)
Marshall P. Keys, M.D.
Pediatric Opthalmology & Strabismus
121 Congressional Lane,
Suite
601
Rockville
,
MD
20852
(301) 231-7070
Dr. Joanne Waeltermann, M.D.
Pediatric Opthalmology & Adult Strabismus
1011 Frederick Rd.
Catonsville
,
MD
21228
(410) 744-0400
Edward
Parelhoff, M.D.
8134 Old Keene Mill Rd.
Springfield
,
VA
(703) 451-6111
David
Hunter, M.D., Ph.D.
Asst. Professor,
Strabismus & Pediatric Ophthalmology
The Wilmer Eye
Institute, B1-35
The
Johns
Hopkins
Hospital
Baltimore
,
MD
21287-9009
(410) 955-8314
fax (410) 955-0809
Jerome S. Casper, D.M.D.
Children's Dentistry & Orthodontics
2923-D Olney-Sandy Spring Rd.
Olney
,
MD
20832
(301) 924-5500
and
2225-G Defense Highway
Crofton
,
MD
21114
(301) 261-0414 or (410) 721-3393
Dr. Shultz
Kernan
Hospital
Dental Unit
2200 Kernan Dr
.
Baltimore
,
MD
21207
(410) 448-6290
Dr. Roger G. Wood
Pediatric Dentist
Wood, Dunlevey & Lomba-dozi
11601 Robibus Rd., Suite 130
Midlothian
,
VA
23113
(804) 794-3498
Preston
Shelton
, D.D.S.
University
of
Maryland
U.M.F.D.S.P.
Associates, P.A.
Faculty Practice
666 West Baltimore St
.
Baltimore
,
MD
21201-1586
(410) 706-7970
Susan Falck-Muten (speech therapy)
Reston
,
VA
(703) 707-0090
Francie Mitchell (physical therapy)
VA
(703) 689-4451
Zahava
Alon
(physical therapy)
12023
Montrose
Village
Terr.
Rockville
,
MD
20852
(301) 984-7020
Diane
Lewis
(speech therapy)
Communication
Enrichment Services
5109 Battery Lane
Bethesda
,
MD
20814
(301) 652-2220
Kathy Rodriguez (physical therapy)
Pediatric Therapy Associates
(301) 942-6006
Offices in
Wheaton
and
Bowie
,
MD
Works with children from birth to age 15
PWS
parents who are also therapists:
Linda
Noll (physical therapy)
Rockville
,
MD
(301) 949-1756
Ellen
Gootzit (occupational therapy)
Baltimore
,
MD
(410) 653-9534
Anne
Benjamin (speech pathologist)
Cambridge
,
MD
(410) 228-7967
Each
state and the
District of Columbia
provide free early intervention services under the Individuals with
Disabilities Education Act. There is a contact number for each state and each
program within the state (called the “single point of entry”). The central
numbers are:
Maryland
Infants and
Toddlers Program/Preschool Services
(800)
535-0182 (toll-free in
Md.
)
(410)
767-0261 (in
Baltimore
)
Virginia
Babies Can’t Wait
(Birth
through age 2)
(804)
786-0992
(Ages
2 through 5)
(800)
225-2020 (toll-free in
Va.
)
(804)
225-2675 (in
Richmond
)
DC
Early Intervention Program
(202)
727-5930
Sue
Antell, Ph.D.
(psychologist)
Greenspring
Mental Health Services
5565 Sterrett Place
Columbia
,
MD
21044-2642
(410)
964-3666
Edwin
Carter, Ph.D. (psychologist)
6116
Rolling Rd.
Springfield
,
VA
(703)
569-8731
Ramasamy
Manikam, Ph.D. (psychologist)
Univ. of
Maryland
Hospital
22 S. Greene St. #N5E23
Baltimore
,
MD
21201
(410) 328-0812
Kennedy Krieger Institute
Feeding
Disorders Program and Outpatient Behavioral
Pediatrics Clinic
707
North Broadway, Rm. 216
Baltimore
,
MD
21205
(410)
550-9455
Gail
Walter, Ph.D.
(psychologist)
6937 Pindell School Rd.
Fulton
,
MD
20759
(410)
531-5087
The Children’s Institute
6301 Northumberland St.
Pittsburgh, PA 15217
(412) 521-9000
Program director: Ken Smith
(Formerly known as The Rehabilitation Institute, this facility is well known
for its specialized crisis intervention program for children and adults with
PWS)
Cumberland
Hospital
Daniel N. Davidow, M.D.,
Medical Director
Cumberland
Hospital
for Children
9407 Cumberland Road
New
Kent
,
VA
23124
(800) 368-3472
Admissions: Lorraine
Justice,
ext. 678
Kennedy Krieger Institute
Feeding
Disorders Program and Outpatient
Behavioral
Pediatrics Clinic
707
North Broadway, Rm. 216
Baltimore
,
MD
21205
(410)
550-9455
The following schools are known to be familiar with or currently serving
children with PWS:
The
Benedictine
School
(residential,
ages
5-21)
14299 Benedictine Lane
Ridgely, MD 21660
(410)
634-2112
www.benschool.com
Hannah
More
School
PO Box
249
12039 Reisterstown Rd.
Reisterstown
,
MD
21136-0249
(410) 526-5000
Ivymount
School
(ages 3-21)
11614
Seven Locks Rd.
Rockville
,
MD
20854
(301)
469-0223
Woods Services (residential
program
for adolescents and adults with PWS)
Route
213
Langhorne
,
PA
19047
1-800-782-3646
Selene Almazan
Director
of Advocacy
Maryland
Coalition for
Inclusive Education
7484 Candlewood Road
—Suite R
Hanover
,
MD
21076
(410)
859-5400
E-mail:
mcie@mcie.org
(sliding
scale fee for advocacy services; focused on obtaining appropriate educational
services in the least restrictive environment)
Mathew
Bogin/Michael Eig
Bogin
& Eig, P.C., Attorneys at Law
Suite
300
1776 Massachusetts Ave., N.W.
Washington
,
DC
20036
(202)
667-7373
Ellen Callegary
Callegary & Steedman, P.A.
415 St. Paul Place
Baltimore
,
MD
21202
(410) 576-7606
Email: ellen@atscom.net
Peter Wright
Richmond
,
VA
(800)
SHANNON
(804) 257-0857
(804) 755-3000
www.writeslaw.com
(free e-mail newsletter and good collection of articles
and other resources on this website)
The following camps have served individuals with PWS in
the past and have been recommended by at least one family.
Camp
Greentop
(residential)
Sabillasville
,
MD
(410) 323-0500
www.campgreentop.org
Camp
Sky
Ranch (residential)
634 Sky Ranch Rd.
Blowing
Rock
,
NC
28605-9738
(704) 264-8600
(2-week sessions for campers of all ages with mental disabilities)
Camp
Keystone
(residential)
RR 1,
Box
1515
Gouldsboro
,
PA
18424
(717) 842-4521
(ages over 6, various disabilities; operated by Keystone City Residence,
which runs group homes for adults with PWS)
Camp
Lee
Mar (residential)
Route 590
Lackawaxen
,
PA
18435
(717) 685-7188
Winter
address:
805 Redgate Rd.
Dresher
,
PA
19025
(215) 658-1708
E:mail: gtour400@aol.com
www.leemar.com
(ages 5-21 with various disabilities)
Fairlee Manor Recreation and
Education
Center
(residential,
respite)
22242 Bay Shore Road
Chestertown
,
MD
21620
(410)
778-0566
www.fairleemanor.org/
(operated by Easter Seal
Society of Del-Mar, Inc.; offers year-round respite weekends and summer camp
programs for children and adults with various disabilities)
Kamp
A-Kom-plish (residential,
inclusive)
Nanjemoy
,
MD
(301)
870-3226
Director:
Heidi Aldous
(operated
by Melwood Horticultural Training)
Mayo
Day Camp
(day)
(at
Mayo
Beach on the Chesapeake)
Anne
Arundel County Department of Recreation and Parks
(410)
222-7300 or (410) 261-8036 (South
County)
(Camp
Mayo
offers one-week day camp sessions throughout the summer; focus on success,
enjoyment and socialization)
DanceAbilities
6314 Falling
Brook Drive
Burke
,
VA
22015
(703) 250-7777
E-mail: dance@danceabilities.com
http://www.DanceAbilities.com
Therapeutic
& Recreational Riding Center, Inc. (TRRC)
3750 Shady Lane
Glenwood
,
MD
21738
(410) 489-5100
Helen Tuel, Director
YES, Inc. (Youth Exercise Services)
P.O. 279
Fruitland
,
MD
21826
(410) 742-9201
Fred Vanderveen
SPECIAL
OLYMPICS:
Maryland
Special Olympics
(410) 290-7611 ext.
3007
E-mail: somdmail@somd.org
www.somd.org/
Virginia Special Olympics
(804) 346-5544
(800) 932-GOLD
E-mail: spolva@aol.com
www.specialolympicsva.com
DC Special Olympics
(202) 544-7770
E-mail: wdcso@aol.com
OTHER RECREATION
RESOURCES:
Contact
the Therapeutic Recreation section of
your county or local public recreation department; Girl Scouts or Boy Scouts; or
try chapter members in your area and your local parent information center for
other suggestions.
There are several organizations in our region that currently operate group
homes specifically designed for people with PWS:
Community Systems Inc.
8136 Old Keene Mill Rd.
, Suite B-300
Springfield
,
VA
22152
(703) 913-3150
Website: www.communitysystems.org
Executive Director: Susan Greene
E-mail: sgreen@communitysystems.org
(operates two group homes in
Northern Virginia
for adults with PWS)
Community Alternatives
Norfolk
,
VA
(757) 468-7000
Director of Residential Programs: Lora
Rose, ext. 111
E-mail: lrose@comalt.org
Chimes, Inc.
4815 Seton Dr
.
Baltimore
,
MD
21215
(410) 944-4415
Director of residential services: Doug McQuade
(operates four group
homes in
Baltimore
area for adults with
PWS)
P. Sue Kullen
Human Services Consulting
2847 Governors Run Rd.
Port
Republic
, MD 20676
(410) 586-9575
(Ms. Kullen is a private consultant who helped create an individualized
two-person shared-house situation for two adult men with PWS through the Arc of
Southern Maryland)
To
qualify for residential services, individuals with PWS must
meet requirements for funding in their state or jurisdiction. Funding normally
comes from the federal Medicaid program under a state “waiver” that allows
use of these funds for community living supports. Most states, including
Maryland
and
Virginia
, have long waiting lists for services. It’s important to apply for services
and get on the waiting list in your state if you anticipate that services will
be needed for your child.
In
Maryland, this means completing an application from the Developmental
Disabilities Administration (DDA).
In
Virginia
, individuals
must qualify through their local Community Services Board (through the Mental
Retardation Waiver). Families of those who don’t have mental retardation but
who need intensive supports services should contact the national PWSA (USA)
office for crisis assistance.
For state agency listings, go to www.nichcy.org
and search for the State Resource sheet for
Maryland
, D.C. or
Virginia
.