PWSA of MD, VA, and DC Resource Directory

February 2004

• PWS CLINICS/CENTERS 

• GENETICS CENTERS 

• PEDIATRICIANS 

• GENERAL PRACTITIONERS 

• NUTRITION/WEIGHT MANAGEMENT 

• PHYSICAL MEDICINE 

• NEUROLOGISTS 

• ORTHOPEDIC/SCOLIOSIS SPECIALISTS 

• ORTHOTISTS (BRACE MAKERS) 

• EYE DOCTORS 

• DENTISTS 

• PRIVATE THERAPISTS 

• EARLY INTERVENTION PROGRAMS 

• BEHAVIOR 

• CRISIS INTERVENTION 

• PRIVATE SPECIAL EDUCATION SCHOOLS 

• SPECIAL EDUCATION ATTORNEYS 

• SUMMER CAMPS 

• SPORTS/RECREATION PROGRAMS 

• RESIDENTIAL SERVICE PROVIDERS 

• BEHAVIOR

PWS CLINICS/CENTERS

University of Maryland Medical System

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:

The Kennedy Krieger Institute

For information or to schedule appointments, call (443) 923-2740. The clinic sees patients quarterly, on the 5^th 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

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

Clinic coordinator: Carla Johnson

GENETICS CENTERS

The following centers are known to work with many individuals with PWS.

Children’s National Medical Center

University of Virginia Health System

Genetic counselors: Patricia Allinson, Carolyn Ohle

ENDOCRINOLOGISTS

Karen Armour, M.D.

Audrey Austin, M.D.

Gail Blandin, M.D.

Debra Counts, M.D.

Leslie Plotnick, M.D.

Barry Reiner, M.D.

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                                         

Dr. Shehzad Basaria, Dr. Roberto Salvatori

Dr. Ann Scheimann (pediatric gastroenterology)

Dr. Helena Rodbard (adult & adolescent endocrinology)

Dr. Dwight F. Matthias (adult & pediatric endocrinology)

PEDIATRICIANS

Ted Abernathy M.D.

Jon Farber, M.D. (developmental)

Marcia Schwartz, M.D.

Michael Sherlock, M.D.

Stephanie Sullivan, M.D.

J. Ronald Walcher, M.D.

GENERAL PRACTITIONERS

NUTRITION/WEIGHT MANAGEMENT

Ann Scheimann, M.D.

Kathryn Camp, R.D., C.S.P. (pediatric nutritionist)

Faith Hicks, R.D. (pediatric nutritionist)

Elizabeth Shipley-Moses (nutritionist)

PHYSICAL MEDICINE & REHABILITATION

Katherine Alter, M.D.

NEUROLOGISTS

Peggy A. Hanson, M.D.

Rebecca Ickord, M.D.

Edwin Myer, M.D.

ORTHOPEDIC/SCOLIOSIS SPECIALISTS

John Herzenberg, M.D.

Paul McAffee, M.D.

Paul D. Sponseller, M.D.

Laura Tosi, M.D.

Steven Tuck, M.D.

Shriners Hospital

(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.)

ORTHOTISTS (BRACE MAKERS)

Foot orthotics:

Greg Banks

Cindy Fox

Scoliosis braces:

Luke Stikeleather

Fitting shoes for orthotics:

Ed Jurgrau

(Ed has fitted many kids who wear orthotics and provides great, personalized service at no extra charge.)

EYE DOCTORS

Marshall P. Keys, M.D.

Dr. Joanne Waeltermann, M.D.

Edward Parelhoff, M.D. 

David Hunter, M.D., Ph.D.

DENTISTS

Jerome S. Casper, D.M.D.

Dr. Shultz

Dr. Roger G. Wood

Preston Shelton , D.D.S.

PRIVATE THERAPISTS

Susan Falck-Muten (speech therapy)

Francie Mitchell (physical therapy)

Zahava Alon (physical therapy)

Diane Lewis (speech therapy)

Kathy Rodriguez (physical therapy)

PWS parents who are also therapists:

Linda Noll (physical therapy)

Ellen Gootzit (occupational therapy)

Anne Benjamin (speech pathologist)

EARLY INTERVENTION PROGRAMS

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

Virginia Babies Can’t Wait

DC Early Intervention Program

BEHAVIOR

Sue Antell, Ph.D. (psychologist)

Edwin Carter, Ph.D. (psychologist)

Ramasamy Manikam, Ph.D. (psychologist)

Kennedy Krieger Institute

Gail Walter, Ph.D. (psychologist)

CRISIS INTERVENTION

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

Admissions:  Lorraine Justice, ext. 678  

Kennedy Krieger Institute

PRIVATE SPECIAL EDUCATION SCHOOLS

The following schools are known to be familiar with or currently serving children with PWS:

The Benedictine School (residential, ages 5-21)

Hannah More School

Ivymount School (ages 3-21)

Woods Services (residential program for adolescents and adults with PWS)

SPECIAL EDUCATION ATTORNEYS

Selene Almazan

(sliding scale fee for advocacy services; focused on obtaining appropriate educational services in the least restrictive environment)

Mathew Bogin/Michael Eig

Ellen Callegary

Peter Wright

(free e-mail newsletter and good collection of articles and other resources on this website)

SUMMER CAMPS  

The following camps have served individuals with PWS in the past and have been recommended by at least one family.

Camp Greentop (residential)

Camp Sky Ranch (residential)

(2-week sessions for campers of all ages with mental disabilities)

Camp Keystone (residential)

(ages over 6, various disabilities; operated by Keystone City Residence, which runs group homes for adults with PWS)  

Camp Lee Mar (residential)

Winter address:

(ages 5-21 with various disabilities)

Fairlee Manor Recreation and Education Center (residential, respite)

(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)

(operated by Melwood Horticultural Training)

Mayo Day Camp (day)

(Camp Mayo offers one-week day camp sessions throughout the summer; focus on success, enjoyment and socialization)

SPORTS/RECREATION PROGRAMS  

DanceAbilities

Therapeutic & Recreational Riding Center, Inc. (TRRC)

YES, Inc. (Youth Exercise Services)

SPECIAL OLYMPICS:

Maryland Special Olympics

Virginia Special Olympics

DC Special Olympics

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.

RESIDENTIAL SERVICE PROVIDERS

There are several organizations in our region that currently operate group homes specifically designed for people with PWS:

Community Systems Inc.

(operates two group homes in Northern Virginia for adults with PWS)

Community Alternatives

Chimes, Inc.

(operates four group homes in Baltimore area for adults with PWS)

P. Sue Kullen

(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 .