VCFSEF Support Groups & Contacts in the United States

The support groups listed were established to aid parents & family members in learning about and dealing with and the many facets of caring for a person with Velo-Cardio-Facial Syndrome.  The groups are educational and supportive in nature ONLY.   They are NOT medical service providers, nor do they provide medical advice or opinion. Medical advice should be obtained ONLY from a qualified medical professional.

If the support group or person you choose does not have knowledge of qualified medical professionals in your area who are familiar with VCFS, please contact the Foundation Office and we will attempt to assist you. Support Group information is updated regularly. If you do not find a support group near you, please contact the Foundation Office and will try to locate a contact.


States: **
AK  AL  AR  AZ  CA  CO  CT  FL  GA  IA  ID IL IN  KS  KY  LA  MA  MD  ME  MD  MI  MN  MO  MS  MT  NC  NE  NH  NJ  NM  NV  NY  OH  OK  OR  PA  RI  SC  SD  TN  TX  UT  VA  VT  WA  WI

** Not every state is represented.

Alabama

  • Valerie Bonds
    4498 Village Green Drive
    Birmingham, AL 35242
    (205) 991-6744
    Email: [email protected]

Alaska

  • Amy Paff
    23715 Chandelle Dr
    Chugiak, AK 99567
    Phone: (907)227-1404
    Email: [email protected]

Arizona

  • Jennifer Rockrich
    8821 N. 9th Ave.
    Phoenix, AZ 85021
    602-944-2832 home
    602-908-7100 cell
    [email protected]
     
  • Sherry Gomez
    Glendale, AZ 85306
    (602) 789-6416
    Email: [email protected]

California

Colorado

  • Kimberly Wharton
    608 south Inca Drive
    Pueblo West, CO.81007
    Phone: 719-547-1616
    [email protected]

Connecticut

  • Northeast VCFS Support Group
    Lisa Jennings
    385 North Street
    Weymouth, MA 02191
    Phone: 781-335-6652
    E-mail: [email protected] 
     
  • Northeast VCFS Support Group
    Maureen Anderson
    (supports Connecticut also)

    2 Lansing Drive
    Salem, NH 03079
    Phone: 603-898-6332
    E-mail: [email protected] –> Kirsten Montgomery
    62C Patricia Avenue
    North Stonington, CT 06359
    Phone: 860-204-9391
    E-mail: [email protected]

Florida

Georgia

  • Christy Felix
    220 Pendleton Drive
    Athens, GA 30606
    Phone: 706-543-3300
    Email: [email protected]
     
  • Karlene Coleman, MN, CGC
    Children’s Healthcare of Atlanta
    1405 Clifton Road, NE
    Atlanta, GA 30322-1101
    Phone: 404-325-6641
    Email: [email protected]
     
  • Lorraine Echols-Stewart
    1906 Ward Circle #4
    East Point, GA  30344-1514
    Email:  [email protected]
     
  • Latise Miller
    726 Jackson Circle
    Powder Springs, GA 30127
    Phone:  (770) 919-9510
    [email protected]

Idaho

Illinois

Indiana

Iowa

  • IOWA VCFS/DIGEORGE SUPPORT GROUP
    Jennifer Kokjohn
    A306 Boone Street
    Boone, IA 50036
    Phone: 515-432-0915
    Email: [email protected] 
     
  • Kerry Schadl
    Dubuque, Iowa
    Email: [email protected]

Kansas

  • Trisha Slimmer
    5145 NW Arroya Dr.
    Topeka, KS 66618
    Phone: 785-286-3875
    Email: [email protected]

Kentucky

  • Martin & Margaret Moore
    Phone:  502-921-1057
    Email:   [email protected]
     
  • Tri-State 22Q-VCFS Family Support Network
    Bettsy Leech
    Serving Ohio, Kentucky and Indiana
    Phone: 513-803-1884
    Email: [email protected]
     
  • Missing Pieces
    Ashlee Hamby
    Owensboro, Ky
    Phone: 270-577-5321
    Email: [email protected]

Louisiana

  • Louisiana 22q/VCFS Support Network

    Ashley Bourg
4545 Barataria Blvd
Marrero, LA 70072
(504) 232-7238[email protected]

    Support group meeting held every other month

Maine

Maryland

  • Mid-Atlantic Support Group

Julie Cooper

11901 Minor Jones Drive

Owings Mills, MD  21117-1536

[email protected]

443.463.3845

 

 

Massachusetts

  • Northeast VCFS Support Group
    Lisa Jennings
    385 North Street
    Weymouth, MA 02191
    Phone: 781-335-6652
    E-mail: [email protected]

Michigan

  • VCFS Support Group of Michigan
    Fred & Joanne Berg
    12839 Shady Lane
    Sterling Heights, MI 48313
    (586) 731-1086
    Email: [email protected]
     
  • Crystal Avram
    6318  Alcott
    Petersburg, MI  49270
    (517) 447-4018
    Email:  [email protected]

Minnesota

  • Minnesota VCFS Support Group
    Anna Thurmaes

    Minneapolis, MN
    Phone: (612) 626-3478
    Email: [email protected]

Mississipi

Missouri

Montana

  • Raedene Wipf
    484 Hwy10 E. #1
    Big Timber, MT 59011
    Phone: 406-932-4182
    Email: [email protected]

Nebraska

  • MISSION 22q
    (formerly Nebraska 22q Family Support Group)
    Anne Stalker
    815 West Beal Street
    Lincoln, NE 68521
    Phone:  (402) 435-0221
    E-mail: [email protected]
    Website: mission22q.com

Nevada

New Hampshire

  • Northeast VCFS Support Group
    Lisa Jennings
    385 North Street
    Weymouth, MA 02191
    Phone: 781-335-6652
    E-mail: [email protected]

New Jersey

  • Missy DiSibio
    1 Stafford Way
    Marlton, NJ 08053
    Phone: 856-596-3365
    Email: [email protected]
     
  • NJ VCFS Family Support Group
    Yolanda Ortiz
     Cedar Grove, NJ
    Phone:  973-837-9662
    Email: [email protected]

New Mexico

  • Kathy Weed
    9629 Allande Rd. NE
    Albuquergue, NM  87109
    Phone:  505-822-1871
    Email:  [email protected]

New York

  • Heidi Brown
    3404 county rd 2
    Cincinnatus, NY 13040
    Phone: 607-745-5039
    Email: [email protected]
     
  • Sheryl Beck
    Lido Beach, NY  11561
    Phone: 516-432-1251
    Email: [email protected]
  • Pamela J. Coloton
    P.O. Box 725
    Hunter, NY 12442
    Phone: 518-263-4867
    Email: [email protected]
  • Trisha Pushee
    37 Hillcrest Drive
    Oswego, New York 13126
    Phone: 315-342-0137
    Email: [email protected]

North Carolina

Ohio

  • Michelle Stroh
    2561 Wexford Road
    Columbus, OH 43221
    Phone: 614-486-3503
    Email: [email protected]
     
  • Beth Suschil
    32667 Willowbrook Lane
    North Ridgeville, OH 44039
    Phone: 440-665-8284
    Email: [email protected]
     
  • Tri-State 22Q-VCFS Family Support Network
    Bettsy Leech
    Serving Ohio, Kentucky and Indiana
    Phone: 513-803-1884
    Email: [email protected]

Oklahoma

  • Laura Ross
    1312 Cherry Avenue
    Lawton, OK 73507
    Phone: 405-353-6446
    E-mail: [email protected]

Oregon

  • Kevin and Julie Lorain
    650 16th Ave SE
    Albany, OR  97322
    Phone: (541) 967-4364
    Email: [email protected]
     

  • Frank & Christy Rivera
    PO Box1329
    Boardman, Or 97818
    (541)481-2206
    Email: [email protected]

Pennsylvania

  • Terri Horn
    233 Ruby Dr.
    Collegeville, PA  19426
    Phone:  610-454-0767
    Email: [email protected]
     
  • Peer Supporter for 22q deletion#
    Tammy RoseCranberry
    Twp., Pennsylvania 16066
    Home: (724)776-0970
    Cell:    (724)622-6096
    Email: [email protected]
     
  • John & Kimberly Sullivan
    619 Churchville Lane
    Holland, PA  18966
    Phone: 215-396-7260
    Email: [email protected]
     
  • Leigh Bowser
    Altoona PA,
    CelL: 814- 931-5959
    Home: 814-944-1586
    Office: 814-944-2537
    Work Email: [email protected]
    Home Email: [email protected]

Rhode Island

South Carolina

  • Pam Holland
    2600 Portrush Dr, Apt
    Spartanburg, SC 29301
    Phone:  864-587-9737
    Email: [email protected] 
     
  • Becky Chambers
    3411 Nesting Lane
    Fort Mill, SC  29708
    Phone: 803-547-0646
    Email: [email protected]
     
  • Michelle Willett
    902 Carriage Hill Rd.
    Simpsonville, SC 29681
    Phone: 864-987-9267
    Email:  [email protected]
     
  • Pete Hautem
    Charelston/Summerville, SC
    Email: [email protected]

South Dakota

  • We’re sorry.  No known support groups in South Dakota. 
    If you wish to start a support group or serve as a contact for your area, please notify the Foundation at [email protected] or contact your Regional Director.

Tennessee

Texas & Arkansas


Austin/Central Texas area


Dallas area

  • Ashli Cheung
    Phone: 214-731-9393                                    
    Email: [email protected]
     
  • Heather Holder
    2616 Shady Grove Lane
    McKinney, Texas, 75071
    Phone: 469-952-1780
    Email: [email protected]


East Texas / Houston area


En Español

Utah

  • Bridging the Gap”; 22q and “U”tah
    Amy Steadman
    West Jordan, Utah
    Phone: 801-897-2189
    Email: [email protected]

Vermont

  • Northeast VCFS Support Group
    Maureen Anderson
    2 Lansing Drive
    Salem, NH 03079
    Phone: 603-898-6332
    E-mail: [email protected]

Virginia

  • Northern Virginia/DC Support Group
    Nancy Robbins
    11722 Saddle Crescent Circle
    Oakton, VA 22124
    Phone: 703-620-4178
    Email: [email protected]

Washington State

    Joann Samuels

    4063 240th Place, SE

    Issaquah, WA 98029

    Phone: 425-391-0490

    –>

  • VCFS Family Support Network of Washington State

    • Polly Parson ([email protected] )
      206-523-0142 (Seattle, WA)
    • Lane Richards ([email protected])
      360-452-1786 (Port Angeles, WA)
    • Linda King
      509-874-2921 (Yakima, WA)
    • Bob & Nickki Woods ([email protected])
      509-326-5458 (Spokane, WA)
    • Dan and Mary Driscoll
      253-863-1547 (Tacoma, WA)

Wisconsin

  • If no support group is listed for your state or area, please look to a neighboring state or area for possible assistance.
  • If you would like to be listed as someone who may be contacted regarding VCFS, please email us with the precise contact information which you authorize to be placed on the web site.
  • If you are interested in starting a support group in your area where none currently exists, please contact The Foundation Office and we will provide you with information regarding how start a support group.