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Pediatrics - National Congenital CMV Disease Registry

Houston, Texas

BCM pediatricians care for children in various clinical and hospital environments.
National Congenital CMV Disease Registry
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Parent-to-Parent Worldwide Support Network

The National Congenital CMV Disease Registry assists nearly 600 families affected by CMV by providing a way to exchange information and by offering help and support to one another. When you join or after we receive an update, we will send you the current parent list. We appreciate periodic updates of your family's contact information and your child's profile. Please give us an update about your child's developmental milestones, new treatments, achievements, and accomplishments.

Note: To view the forms (PDF), your computer must be equipped with Adobe Reader.

Parent to Parent Support Network Participants Worldwide

Mouse over dots to see resources available in that country/state. Download the complete, printable resource listing in Adobe Reader (PDF) format.

ARAB EMIRATES

Arab Emirates


Resources: 1
AUSTRALIA

Australia


Resources: 7
BELGIUM

Belgium


Resources: 2
CAMBODIA

Cambodia


Resources: 1
CANADA

Canada


Resources: 19
CHILE

Chile


Resources: 1
EL SALVADOR

El Salvador


Resources: 1
ENGLAND

England


Resources: 16
FRANCE

France


Resources: 5
INDONESIA

Indonesia


Resources: 1
IRELAND

Ireland


Resources: 3
ISRAEL

Israel


Resources: 4
ITALY

Italy


Resources: 1
JAPAN

Japan


Resources: 1
KENYA

Kenya


Resources: 1
MEXICO

Mexico


Resources: 3
NETHERLANDS

Netherlands


Resources: 2
PORTUGAL

Portugal


Resources: 18
SCOTLAND

Scotland


Resources: 1
SLOVENIJA

Slovenija


Resources: 1
SOUTH AFRICA

South Africa


Resources: 1
SPAIN

Spain


Resources: 5
ALABAMA

Alabama


Resources: 9
ALASKA

Alaska


Resources: 3
ARIZONA

Arizona


Resources: 13
ARKANSAS

Arkansas


Resources: 7
CALIFORNIA

California


Resources: 32
COLORADO

Colorado


Resources: 6
CONNECTICUT

Connecticut


Resources: 6
DELAWARE

Delaware


Resources: 1
FLORIDA

Florida


Resources: 31
GEORGIA

Georgia


Resources: 18
HAWAII

Hawaii


Resources: 0
IDAHO

Idaho


Resources: 4
ILLINOIS

Illinois


Resources: 15
INDIANA

Indiana


Resources: 8
IOWA

Iowa


Resources: 12
KANSAS

Kansas


Resources: 6
KENTUCKY

Kentucky


Resources: 7
LOUISIANA

Louisiana


Resources: 13
MAINE

Maine


Resources: 2
MARYLAND

Maryland


Resources: 4
MASSACHUSETTS

Massachusetts


Resources: 12
MICHIGAN

Michigan


Resources: 23
MINNESOTA

Minnesota


Resources: 19
MISSISSIPPI

Mississippi


Resources: 4
MISSOURI

Missouri


Resources: 14
MONTANA

Montana


Resources: 7
NEBRASKA

Nebraska


Resources: 6
NEVADA

Nevada


Resources: 3
NEW HAMPSHIRE

New Hampshire


Resources: 6
NEW JERSEY

New Jersey


Resources: 6
NEW MEXICO

New Mexico


Resources: 5
NEW YORK

New York


Resources: 14
NEW CAROLINA

North Carolina


Resources: 16
NORTH DAKOTA

North Dakota


Resources: 2
OHIO

Ohio


Resources: 16
OKLAHOMA

Oklahoma


Resources: 11
OREGON

Oregon


Resources: 4
PENNSYLVANIA

Pennsylvania


Resources: 15
RHODE ISLAND

Rhode Island


Resources: 0
SOUTH CAROLINA

South Carolina


Resources: 5
SOUTH DAKOTA

South Dakota


Resources: 2
TENNESSEE

Tennessee


Resources: 10
TEXAS

Texas


Resources: 58
UTAH

Utah


Resources: 73
VERMONT

Vermont


Resources: 3
VIRGINIA

Virginia


Resources: 13
WASHINGTON

Washington


Resources: 16
WASHINGTON DC

Washington, D.C.


Resources: 2
WEST VIRGINIA

West Virginia


Resources: 2
WISCONSIN

Wisconsin


Resources: 9
PUERTO RICO

Puerto Rico


Resources: 1
Parent-to-Parent Support Network Recommended Resources
Resource Address Phone

Alaska

   
Alaska Center for Children and Adults
Offers: Therapy and Support
1020 Barnette St.
Fairbanks, AK 99701
Visit website
907-456-4003
866-456-4003

Arizona

Arizona School for the Deaf and Blind
Se Habla Espanol
Division of Developmental Disabilities 602-336-6815
Foundation for Blind Children
Offers: helps blind and visually impaired children and adults lead lives of independence & dignity through education, training, counseling, technology
Rose Mofford Center
1235 E. Harmont Drive
Phoenix, AZ 85020
Visit website
800-322-4870
602-678-5800
602-678-5803 (FAX)
Arizona Children's Health Care Corp
Offers: numerous specialized services for chronically ill infants & children with developmental delay. Therapeutic, psycho-social, educational assistance and hospital care.
1402 East South Mountain Ave.
Phoenix, AZ 85042
Visit website
602-243-4231
602-243-1217 (FAX)

California

   
John Tracy Clinic
Offers: free services worldwide for parents of infants and preschool children with hearing loss.
Se Habla Espanol
906 W. Adams Blvd.
Los Angeles, CA 90007
Visit website
800-522-4582
213-748-5481
213-749-1651 (FAX)
213-747-2924 (TTD)
The Resource Foundation for Children With Challenges (RFCC)
Offers: Support group providing educational resources, including parent matching services
P.O. Box 1405
Santa Clarita, CA 91386-1405
Visit website
Email
Early Intervention Program, Sacramento County Office of Education
10474 Mather Blvd.
P.O. Box 269003
Sacramento, CA 95826-9003
 
Lori Ann Infant Program
67 East Ashlan
Fresno, CA 93722-4186
559-248-7236

Colorado

 

 

Colorado Neurological Institute Center for Hearing "NCI Cochlear Kids Camp"
Offers: special camp for children with cochlear implants. Provides an accepting environment for recreation, socialization, peer & family support
701 East Hampden Ave., Suite 330
Englewood, CO 80113
Visit website
303-788-4010
303-788-5469 (FAX)

Connecticut

   
National Organization for Rare Disorders, Inc. (N.O.R.D.)
Offers: National support & information system
55 Kenosia Ave.
P.O. Box 1968
Danbury, CT 06813-1968
Visit website
800-999-6673
203-744-1000
203-797-9590 (TDD)
Connecticut Birth to Three - Early Connections Danbury, CT
Visit website
800-505-7000

Florida

   
Exceptional Student Education Services of Florida
Support for: Deaf and hard of hearing, dual sensory impaired (deaf-blind), speech and language impaired. Also, physically, emotionally, mentally impaired.
Dept. of Education, Office of the Commissioner
Turlington Building,
325 West Gaines Street Suite 1514
Tallahassee, FL 32399
Visit website
800-445-6739
850-245-0505
850-488-2317
850-245-9667 (FAX)
Family's First of SW Florida Offers: Support group for parents with disabilities
Fortmyers, FL 11381
239-690-2900
239-332-7568 (FAX)
Attention to Sheryl Soukups
Island Dolphin Therapy
Offers: Dolphin assisted therapy to critically disabled children, and special needs children from all over the world. A variety of programs are offered which allows children to work-one-on-one with skilled therapists and an amazing interaction with dolphins
31 Corrine Place
Key Largo, FL 33037
Visit website
305-451-5884
305-453-5399 (FAX)
Shriners Children's Hospital
Offers: medical care free of charge to children with burns or in need of orthopedic care.
Shriners International Headquarters
2900 Rocky Point Drive
Tampa, FL 36307-1460
Visit website
800-237-5055 U.S.A.
800-361-7256 Canada
813-281-0300
Dr. Robert Lawrence, Infectious Disease Specialist
University of Florida
Gainesville, FL
352-865-0111

Georgia

   
Georgia Pines
Offers: Services for children birth to three. Teach families techniques to enhance the child's development particularly related to sensory impairment.
890 North Indian Creek Drive
Clarkston, GA 30021
Visit website
866-428-4013
404-298-4882
404-298-3610 (FAX)
Kids II, Inc.
Offers: Toys, Books, helpful tools
1015 Windward Ridge Parkway
Alpharetta, GA 30005
Visit website
770-751-0442
770-751-0543 (FAX)

Idaho

   
Christian Homes and Special Kids (CHASK)
Offers: Help for family facing an adverse prenatal (birth parents) diagnosis and adoption
P.O. Box 310
Moyie Springs, ID 83845
Visit website
208-267-6246
800-266-9837
Email

National Challenged Homeschoolers Associated Network (NATHHAN)
Offers: Educational resources for Christian families, raising special needs children
P.O. Box 310
Moyie Springs, ID 83845
Visit website
208-267-6246
Idaho Elks Rehabilitation Hospital
Offers: Numerous therapeutic services available including hippotherapy (therapeutic horse riding therapy) to improve coordination & postural control, improve mobility, normalize muscle tone.
600 N. Robbins Rd.
Boise, Idaho 83702 Visit website
208-489-4444

Illinois

   
Family Resource Center on Disabilities (Coalition of Parents and Professional Organizations)
Offers: Family support, youth advocacy project, seminars on special education rights of children with disabilities
20 E. Jackson Blvd.
Room 300
Chicago, IL 60604
Visit website
800-952-4199
312-939-3513
312-939-3519 (TDD)
Lions Camps (affiliated with International Lions Clubs International service Organization)
Offers: camping experience for physically disabled, hearing and visually impaired and diabetic children
Lions International Headquarters
300 W 22nd St.
Oak Brook, IL 60523-8842
Visit website
630-571-5466

Indiana

   
Easter Seals Rehabilitation Center
Offers: services for disabled children
3701 Bellemeade Ave.
Evansville, IN 47714
812-479-1411

Iowa

   
AEA and Early Education Program
Clear Lake, IA
 

Massachusetts

   
Emerson Program of Boston, MA
Clarke School for the Deaf
Learning Center for Deaf Children
Framingham, MA
Visit website
413-584-3450 (TTY)
413-584-8273 (FAX)

Michigan

   
Early-On P.T.
Offers: physical therapy service throughout Michigan
Visit website
 

Minnesota

   
Pacer Center at the University of Minnesota
Gellette Children's Hospital
Visit website
800-537-2237

Missouri

   
Idea Factory Education Program
Early Childhood Education Program

Enhances family's role as primary educator & promotes school readiness
P.O. Box 214
605 East Cherry
Nevada, MO 64772
877-353-IDEA
417-549-6700
417-549-9923 (FAX)
Easter Seals Toy Program
Age-appropriate toys can be delivered to the home
2200 E. Sunshine, Suite 103
Springfield, MO 65804
Visit website
417-882-6500
417-882-0230 (FAX)

New Mexico

   
New Mexico School for the Blind & Visually Impaired
Offers: A pre-school in Albuquerque & a boarding school in Alamogordo
  800-437-3506
Sandhills Children's Developmental Center
Valencia Valley, NM

Visit website
 

New York

   
"Our Way" National Orthodox Jewish Organization
Offers: Resources and programs for the Jewish population with hearing loss
NJCD Yachad
11 Broadway, 13th floor
New York, NY 10004 Visit website (click on "Our Way" link)
212-613-8241
212-613-0752 (FAX)
Hebrew Academy For Special Children (H.A.S.C.) Programs
Offers: Educational and clinical services to individuals from infancy through adulthood, who exhibit developmental delays
5902 14th Ave.
Brooklyn, NY 11219
Visit website
718-851-6100

North Carolina

   
Family Support Network of North Carolina
Connects families to local resources & assists with related inquiries
Visit website
800-852-0042
Email
Generations Tadpole
Free toy borrowing services for special needs children in North Carolina
205-G West E Street
Butner, NC 27509-1933
Visit website
888 AT-TRY-IT
919-575-3093
919-575-3095 (FAX)

Ohio

   
Achievement Centers for Children Resources for Parents of Exceptional Children
14587 Madison Ave.
Lakewood, OH 44107
Visit website
216-521-5050

Oregon

   
Eugene Hearing and Speech Center
Offers: speech, language, hearing, for all ages. Fees vary depending upon services given
1500 West 12th Ave.
Eugene, OR 97402
Visit website
541-485-8521(Voice/TTY)
541-485-6159 (FAX)

Pennsylvania

   
Exceptional Parent Magazine
Offers: multiple services & networking for families dealing with a wide range of disabilities
EP Global Communications
551 Main Street
Johnstown, PA 15901
Visit website
800-372-7368
877-372-7368

South Carolina

   
Super Duper Publications
Offers: Toys and resource catalog for numerous educational aids
P.O. Box 24997
Greenville, SC 29616
800-277-8737
800-978-7379 (FAX)

Tennessee

   
S.T.E.P. Support & Training for Exceptional Parents
Offers: Statewide family to family program providing support via information, advocacy, training to parents of eligible special education children
712 Professional Plaza
Greenville, TN 37745
Visit website
800-280-STEP
423-639-0125
423-639-8802 (TTY)
423-636-8217
Tennessee Infant and Parent Services
4097 MSU B Street
Memphis, TN 38152
901-678-3501 (TIPS)
901-323-9478 (FAX)
Atten: Nellie Graham
Tipton County School System
Munford, TN
Visit website
901-476-7145
Glass Seating and Mobility
Helps families determine equipment needs and provides equipment
1687 N. Shelby Oaks Dr.
Memphis, TN 38134
Visit website
901-379-0096

Texas

   
CMV Updates Newsletter From the National Congenital CMV Disease Registry
Texas Children's Hospital and
Baylor College of Medicine
6621 Fannin Street
Houston, TX 77030-2399
Visit website
832-824-4387
State of Texas E.C.I. Program
Offers: statewide services for children birth to three years with developmental delay
4800 N. Lamar Blvd.
Austin, TX 78756
Visit website
800-628-5115
866-581-9328 (TTY)
Isaiah's Place for Deaf and Hard of Hearing
231 HCR 1207
Whitney, TX 76692
254-694-7771 (TTY)
254-205-7880 (Cell/Text)
Therapy at Easter Seals
4443 N. Vosey Lane
Carrollton, TX 75010
 
Walk On! Willow Wood Ranch, Inc. Therapeutic Riding Center
Offers: therapeutic riding center to help improve verbalization, motor skills, mobility
5513 Smiley Rd.
Celina, TX 75009
Visit website
972-347-9616
Hear Me Foundation "Camp Hear Me"
Offers: annual camp for oral-deaf and hard of hearing children that provides numerous recreational activities for children
P.O. Box 42328
Houston, TX 77242-2328
Visit website
281-496-6725
281-496-6725 (FAX)
Community Hospice of Texas
Specializes in end of life and palliative care
Visit website
800-226-0373

Utah

   
Courage Reins Therapeutics
Offers: Hippotherapy for children and adults with neuromusculoskeletal dysfunction.
58 W. 10400 N
Highland, UT 84003
Visit websites
801-756-8900

Washington, D.C.

   
Alexander Graham Bell Association for Deaf and Hard of Hearing
Offers: support network, advocates learning, talking, independent living. Publications, outreach, training, scholarships, financial aid. Chapters through U.S. & Canada. Se Habla Espanol.
3417 Volta Place, NW
Washington, D.C. 20007
Visit website
866-337-5220
202-337-5220
202-337-5221 (TTY)
202-337-8314 (FAX)
American Society for Deaf Children (ASDC)
800 Florida Avenue, #2047
Washington, DC 20002
Visit website
717-703-0073
866-895-4206
Email

West Virginia

   
Central West Virginia Community Harrison County Office Action Association
Offers: Head Start Program and Rehab Services
106 Frederick Street
Clarksburg, WV 26301
Visit website
304-622-8495
304-622-4976 (FAX)

Wisconsin

   
M.U.M.S. Julie J. Gordon (Mothers United for Moral Support, Inc.)
Offers: Help match parents whose children have similar conditions
150 Custer Court
Green Bay, WI 54301-1243
Visit website
877-336-5333
920-336-5333
920-339-0995 (FAX)
Email
Wisconsin First Step Hotline c/o Gundersen Lutheran Medical Center
Offers: Public Health Information & Referral Services for Women, Children & Families
1910 South Avenue
La Crosse, WI 54601
Visit website
800-642-7837

Australia

   
Westmead Children's Hospital
Offers: Osteopaths are very helpful with muscle stiffness & reflux
Hawksberry Rd. at Hainsworth Rd.
Westmead, NSW 2145, Australia
 

Canada

   
Holland Bloorview Children's Rehabilitation Hospital
Offers: Multiple therapies to help children achieve their personal best - physically, academically, emotionally
150 Kilgour Rd.
Toronto, ON
Canada M4G 1R8
Visit website
800-363-2440
416-425-6220
416-425-6591 (FAX)
Advanced Biomechincal Rehabilitation (ABR)
Offers: A unique bio-mechanically based rehabilitation approach for children and young adults with brain injuries that brings predictable recovery of musculoskeletal structure and motor functions.
Visit website
514-328-9837
Child Development Centre for Physical Therapy and Occupational Prince George Therapy
Offers: comprehensive services to children, youth, disabled adults
1687 Strathcona
British Columbia
Canada V2L 4E7
Visit website
250-563-7168
250-563-8039

England

   
Congenital CMV Association
Offers: Parent to parent support
128 Northfields Lane Brixham, Devon, England TQ5 9LU
Keri Dudley 01803 856496

Spain

   
Panide Child Education Association
Avd. Cadit
Conjunto Galicia
Ed Lugo
Bajo
Granada, Spain (Espana)
958 126176

Global Resources (networks, internet, regional, etc.)

National Congenital CMV Disease Registry
Visit website
 
Centers for Disease Control
Visit website
 
CMV Parent Support Group
Offers: Website support
Visit website
 
Facebook Groups: Parents of Children Born With COM
Visit website
 
MySpace
Visit website
 
Our-Kids Website Support Group
Offers: support to parents caregivers and other working with children who have physical and/or mental disabilities
Visit website
 
Parent Support Group Contact
Offers: Listserv group for online support
  Email Tina Konczol
Parent Support Group Website
Sponsored by CMV Mom Roxanne
Visit website
 
Stop CMV & CMV Action Network Parent Support Group
Offers: information and with a focus on "Prevention Through Awareness"
Visit website
Contact: Janelle Greenlee, Founder
Yahoo Careplace CMV Support Group
Visit website
 
YMCA Counseling Services
Visit websites: USA, Canada, U.K.
Multiple international locations; check local telephone directory
Hands and Voices For Deaf and Hard of Hearing
Boulder, CO
Visit website
303-492-6283
866-422-0422
ARC of the United States
Offers: services for persons with mental retardation and related developmental disabilities and their families. Also, fosters education and research regarding prevention of MR.
1010 Wayne Ave., Ste 650
Silver Spring, MD 20910
Visit website
301-565-3842
301-565-5342 (FAX)
Early Intervention Programs
Offers: Intervention services to infants and toddlers with disabilities and their families.
Contact your state program via internet search engine i.e. Google, Yahoo, etc., local phone book, or visit your local library for information.
 
Canine Companions for Independence
Offers: Assistance dog organization providing exceptional dogs for exceptional people
Visit website
 

Toys, Videos and Books

   
"A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs" By Cindy Dowling
Visit website
 
Baby's 1st Video
Visit website
 
Discovery Toys
Visit website
800-341-TOYS (8697)
"The Out of Sync Child" by Carol Kranowitz
Visit website
 
Baby Tad
Interactive toy - helps soothe baby
Purchase at: Target, Toys R Us and other stores