Related Information

Organizations

• Williams Syndrome Association
  
• International WS Organizations
  

Family WS Web Pages

• Meghan Sings! -- Meghan Finn's web site. (Order her new CD or schedule Meghan and her Mom, Liz Costello, for your next fundraising event.)
• Trent William Johnson Memorial
• The Moylan Family Web Page
• WILLIAMS-FRANCE/EST- Jean-Pierre & Marielle Massel and daughter, Meghan
  email: jean-pierre.massel@wanadoo.fr
• The Sanvito Family Williams Syndrome Site (in Italian) email: klsanvit@tin.it

Medical & Genetics Links

• GeneClinics - Medical Genetics Knowledge Base
• The Hyperacusis Network

Williams Syndrome Clinics

• Los Angeles - UCLA Behavioral Genetics Clinic

Specializing in adults and children with Williams Syndrome and other neurogenetic disabilities for behavioral issues.

Dr. Bhavik Shah, Psychiatrist

Naghmeh Dorrani, MS; CGC, Clinic Coordinator, (310)794-9516

• San Diego - Children's Hospital & Health Center

Outpatient Department, Children's Way
San Diego, CA 92123
Dr. Fred Rose (Salk Institute), (619)453-4100, ext. 1222

• Park Ridge - Lutheran General Hospital

1875 Dempster, Suite 340

Park Ridge, IL 60068

Dr. Lydia Jazmines (847) 696-7705

• Boston - The Children's Hospital

  300 Longwood Ave.
  Boston, MA 02115
  Meriad (617) 355-6501

• Bronx - Williams Syndrome Clinic, Center for Congenital Disorders, Children's Hospital at Montefiore

  3415 Bainbridge Avenue
  Bronx, NY 10467
  (718) 741-2323
  Dr. Robert W Marion, M.D., Director, Center for Congenital Disorders

• Buffalo - Children's Hospital of Buffalo

219 Bryant St.
Buffalo, NY 14222
Dr. Laurie Sadler (716) 878-7530

• New Hyde Park - Schneider Children's Hospital

New Hyde Park, NY 11040

Dr. Joyce E. Fox (718) 470-3010

• Cincinnati Center for Developmental Disorders

  Elland & Bethesda Av.
  Cincinnati, OH 45229-2899
  Dr. Nancy Lanphear (513) 636-4688

• Cleveland Rainbow Babies & Children's Hospital

  Lakeside 1500
  11100 Euclid Av
  Cleveland, OH 44106
  Ms. Jennifer Donohoe (216) 844-3936

• Ohio State University - The Nisonger Center

  Multidisciplinary Williams Syndrome Clinic
  McCampbell Hall
  1581 Dodd Drive
  Columbus, Ohio 43210
  Sherry Feinstein (614) 292-0775

• Philadelphia - Children's Hospital of Philadelphia

Children's Hospital of Philadelphia
Room 9 South #20
34th St & Civic Center Blvd
Philadelphia, PA 19104-4399
tel. 215-590-3376
fax 215-590-4297
metabolic@email.chop.edu

MedicAlert® ID Bracelets

Music Therapy

• Coast Music Therapy - Music therapy is a professional health discipline that uses music as a therapeutic stimulus to achieve non-musical treatment goals. Research documents that many children with special needs exhibit a high level of preference for music and show processing capabilities for musical stimuli that support deficits in related non-music areas. In this way, music can be used as a motivator and alternate learning avenue for select skills that may be more difficult for an individual to achieve using typical non-music instructional approaches. Music-based approaches used by music therapists include singing, rhythm activities, movement, and instrument playing designed to target developmental or educational goals. Services include direct therapy or consultation.
• Rocky Mountain Therapy Connections - We are a music therapy agency based in Denver, Colorado. Our therapists work with children and adults with a variety of disabilites (including William's syndrome).

Disability Links

• Association of Retarded Citizens (Arc) - Excellent inclusive Home Page
• Best Buddies International, Inc. - Best Buddies is a nonprofit organization dedicated to enhancing the lives of people with mental retardation by providing opportunities for socialization and employment.
• Exceptional Parent Magazine - Exceptional Parent Magazine's online resource. Continuing 30 award winning years of providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities and the professionals who work with them.
• National Academy for Child Development
• National Center to Improve Practice (NCIP) - promotes the effective use of technology to enhance educational outcomes for students with sensory, cognitive, physical and social/emotional disabilities.

Adult Educational & Residential Opportunities

Dear Parents,

As the Williams syndrome population begins to age, the WSF will be providing information regarding long-term residential and academic opportunities.

One of the main concerns is "What will happen to our WS child after we die?" Hence, many families are or will be looking for a safe, healthy environment where our children can live such a life, as well as a productive life without being a burden on their siblings.

There are many ways that this can be done. We start by listing long term residential academies and villages. But, there are other options and we will be pleased to post any relevant information, web pages and/or other contact information.

If you know of any facilities in your area not listed below, please send the pertinent information to  williamssyndrome@att.net for inclusion on this web site.

• Berkshire Hills Music Academy --

  Our Mission Is…

  To educate, train, and develop the talent of young adults with special learning needs in a community that shares a passion for music so they can achieve personal growth and make a positive contribution to society.

  Overview

  Berkshire Hills Music Academy is a private post-secondary school for young adults (18+) with strong musical aptitude who have special educational needs due to learning, cognitive, or developmental disabilities. In a two-year certificate program, the Academy offers students an integrated curriculum of academic, practical, pre-vocational, and musical studies designed to facilitate their transition to productive adulthood with a high quality of life.

• Baddour Memorial Center, Senatobia, MS (near Memphis, TN)

• Marbridge Village, Manchaca, TX (Near Austin)

• The Stewart Home, Frankfort, KY

• The Jewish Association for Residential Care (JARC), Oakland County, MI

• 20 E Street Project, Portland, ME

• Camphill Communities -- Camphill is dedicated to social renewal through community building with children, youth, and adults who have developmental disabilities. In a time where many are experiencing a crisis of spirit and search for meaning, Camphill offers a life of celebration, service, and community building in which all participants flourish.

• AHRC of New York City provides residential opportunities for the developmentally disabled throughout the New York City area. We are considering developing a residential program that would primarily serve those diagnosed with WS. For more information, please contact:

  Marcia Richman

  Director of Nursing

  AHRC of NYC

  Department of Residential Services

  200 Park Avenue South

  New York, New York 10003

  212-780-4455

  California Regional Centers support a number of residential programs. It’s important if you live in California to check with your Regional Center locally and see what is available for transition living and life time residential opportunities. A new residence is currently being built called “Casa de Amma” in San Juan Capistrano that is private and beautiful, but expensive. There are residential programs in Northern California run by Marin ARC (MARC) and a training program run by ARC Ventura.