USA

22q11.2 Clinic Consortium Spotlight

The International 22q11.2 Foundation is spotlighting each of the dedicated 22q clinics around the world, as they share their information, so families can learn more about the clinics, their offerings and resources, as well as location and specialties.

Sacramento, CA – 22q Healthy Minds Clinic at UC Davis MIND Institute

The 22q Healthy Minds Clinic at UC Davis was created in 2008 and has served over 100 patients to date. Healthcare professionals from the UC Davis Departments of Pediatrics provide services to 22q patients and their families while collaborating with the MIND Institute research program in chromosome 22q11.2 deletion syndrome to support their clinical work. The MIND Institute’s 22q11.2 Research Center and Clinic is directed by Dr. Tony J. Simon and funded by the National Institutes of Health.

A Developmental Behavioral Pediatrician and a Licensed Clinical Psychologist (specializing in developmental neuropsychology) comprise the clinic’s professional staff. Clinical assessments are currently available on the 2nd Wednesday and 4th Monday of each month.

The clinic currently serves a broad age range of children and adolescents – from newborn to 14 years of age — diagnosed with chromosome 22q11.2 deletion syndrome and their families.

A typical visit to the center includes a four hour neuropsychological testing, consultation and feedback with the team. The 22q Healthy Minds Clinic at UC Davis provides expert evaluation of the brain, body and behavior of a child with 22q, along with recommendations for parents, caregivers and school.

Main Contact: June LaMarr Email: jhlamarre@ucdavis.edu

Address: 2825 50th St., Sacramento, CA 95817
Phone: (916) 703-0440

Cognitive Neuroscientist: Tony Simon, PhD

Visit their website to learn more

 

 

 

 

Birmingham, AL – 22q Clinic

Children’s of Alabama

Address: 1720 2nd Ave South, Kaul 202C  – Birmingham, AL 35294
Phone: (205) 996-9480

Geneticist:  Nathaniel Robin, MD

Genetic Counselor:  Katie Nelson, MS, CGC

Clinic Coordinator:  Asiah Reaves, BS

Website    

Phoenix, AZ – Phoenix Children’s Hospital

Address: 1919 E Thomas Road – Phoenix, AZ 85016
Phone: (602) 933-2252

Geneticist: Theresa Grebe, MD
Plastic Surgeon: Davinder Singh, MD
Genetic Counselor: Brittany Kraeer, MS, CGC
Clinic Coordinator: Vanessa Stohl

Email: 22qcenter@phoenixchildrens.com
Website

Los Angeles, CA – UCLA 22q Clinic

Address: 200 Medical Plaza, Ste 265 Los Angeles, CA 90095
Phone: (310) 206-6581

Clinical Genetics: Sulagna Saitta, MD, PhD

Genetic Counselor: Marina Dutra-Clarke, MS, LCGC (310) 206-6581

Email:mdutraclarke@mednet.ucla.edu

Special Note: Clinic sees children and adults diagnosed with 22q11.2 deletion and duplication syndromes. Their team includes a geneticist, genetic counselor, immunologist, and cardiologist, with consultations from neuropsychologists. Patients are seen on the 2nd Wednesday of every month.


Los Angeles, CA – Children’s Hospital of Los Angeles

Address: 8723 W Alden Drive SSB # 240 – Los Angeles, CA 90048

Phone: (310) 614-3071

Director of Clinical Genetics: Pedro Sanchez, MD

Special Note: Clinic sees Children and Adults

Website 


Sacramento, CA – 22q Healthy Minds Clinic at UC Davis MIND Institute

The 22q Healthy Minds Clinic at UC Davis was created in 2008 and has served over 100 patients to date. Healthcare professionals from the UC Davis Departments of Pediatrics provide services to 22q patients and their families while collaborating with the MIND Institute research program in chromosome 22q11.2 deletion syndrome to support their clinical work.

A Developmental Behavioral Pediatrician and a Licensed Clinical Psychologist (specializing in developmental neuropsychology) comprise the clinic’s professional staff. Clinical assessments are currently available on the 2nd Wednesday and 4th Monday of each month.

The clinic currently serves a broad age range of children and adolescents – from newborn to 14 years of age — diagnosed with chromosome 22q11.2 deletion syndrome and their families.

A typical visit to the center includes a four hour neuropsychological testing, consultation and feedback with the team. The 22q Healthy Minds Clinic @UC Davis provides expert evaluation of the brain, body and behavior of a child with 22q, along with recommendations for parents, caregivers and school.

Main Contact: June LaMarr Email: jhlamarre@ucdavis.edu

Address: 2825 50th St., Sacramento, CA 95817
Phone: (916) 703-0440

Cognitive Neuroscientist: Tony Simon, PhD

Website

 

 

Aurora, CO

The 22q11.2 Multidisciplinary Clinic at Children’s Hospital ColoradoThe 22q Multidisciplinary Clinic at Children’s Hospital Colorado is situated in a state of the art facility on the Anschutz Medical Campus in Aurora, Colorado, home of the largest academic health and research center in the Rocky Mountain region. Children’s Hospital Colorado is ranked No. 9 on the US News Best Children’s Honor Roll for 2018-2019 and is nationally ranked in 10 pediatric specialties. Since our very first 22q clinic back in August 2010 we have had the pleasure of seeing over 250 patients with 22q11.2 deletion syndrome, prenatally thru age twenty-one.  Our clinic philosophy is that we are partners with parents and we walk beside them in their unique journey of 22q11.2, providing accurate and up to date information, provide expert treatment and services, thru all ages and stages so that our patients reach their highest potential. We take a comprehensive, coordinated approach to managing the syndrome, following management guidelines and drawing on an extensive range of pediatric services and specialists in areas such as genetics, cardiology, immunology, ENT, speech, OT, audiology, endocrinology, orthopedics, psychiatry, neuropsychology, child development and more.   In addition, our team of providers meets face to face every month to discuss patients prior to clinic to prepare for a fully individualized clinic visit so that we may have a better understanding of the WHOLE child we are seeing. Our clinic coordinator is a proud parent of a young adult with 22q and enjoys meeting and connecting families affected by 22q11.2.  For more information, or to schedule an appointment please call Mindy Taylor @ 303-724-2589.

Address: 13123 East 16th Avenue – Aurora, CO 80045

Medical Director: Naomi Meeks, MD (genetics) Kelly Nori, CGC

Coordinator: Melinda Taylor

Email: 22q@childrenscolorado.org

Schedule an appointment: (303) 724-2589

New Haven, CT – Yale School of Medicine Pediatric Specialty Center

Phone: (203) 785-2660

Plastic Surgeon: John Persing, MD

Endocrinologist: Stuart Weinzimer, MD

Genetics: Hui Zang, MD

Website  

Joe DiMaggio Children’s Hospital 22q Multidisciplinary Clinic

Medical Director: Francis Jeshira Reynoso Santos, MD
Genetic Counselor: Kim Glaser MS, CGC

Address: 1131 N 35th Ave, Second Floor – Hollywood, FL 33021

To schedule an appointment please call 954-265-6319

Specialties: Genetics, ENT, Endocrinology, Immunology, Speech Therapy

Special Note: Clinic meets the third Wednesday of each month


Miami, FL – Miami Children’s Hospital

Address: 3100 Southwest 62nd Avenue, – Miami, FL 33155
Phone: (305) 663-8595

Clinical Genetics: Mislen Bauer, MD

Atlanta, GA – 22q Clinic at Children’s Healthcare Atlanta

Address: Uppergate Drive – Atlanta, GA 30322

Medical Director: Lisa Kobrynski, MD

Karlene Coleman, RN, MN, CGC
Phone: (404) 290-6061

Special Note: Clinic meets 1x, 6 slots per month, on 2nd Tuesday

Specialists: Immunology, Endocrine, GI, Genetics

Email: kcole05@emory.edu
Website

Chicago, IL – 22q11.2 Deletion Syndrome Multidisciplinary Clinic, Lurie Children’s Hospital

Address: 225 E Chicago Avenue, Box 59 – Chicago, IL 60611

Phone: (312) 227-6120

Genetics Provider: Lauren Hitchens, APN
Genetic Counselor: Rachel Hickey, MS, CGC

Special Note: Meet 3rd Friday of the month

Specialists: Otolaryngology, Speech and Language Pathology, Audiology and Immunology

Website


Oak Lawn, IL – 22q Diagnostic and Treatment Center at Advocate Children’s Hospital

Address: 4440 W. 95th St., Oak Lawn, IL 60453
Phone: (708) 684-2529

Co-Director: Lydia Jazmines, MD, Genetics
Co-Director: Javeed Akhter, MD, Pulmonology/Immunology
Genetic Counselor: Ellen Trotten, MS, CGC

Website  

Boston, MA – Massachusetts General Hospital New England Regional Center for 22q

Address: 1155 Fruit St., Boston, MA 02114
Phone: (617) 726-1561

Clinical Director: Paula C. Goldenberg, MD
Genetic Counselor: Punitha Kannan, MS, CGC

Email: smassalski@partners.org
Website 

Rochester, MN – Pediatric and Adolescent Medicine in Minnesota

Mayo Clinic

Address: 200 First Street SW – Rochester, MN 55905
Phone: (507) 284-2511
Website   


Minneapolis, MN – VCF Clinic of Children’s Hospitals and Clinics of Minnesota

Clinic Coordinator: Michelle Fendrich
Nursing Coordinator: Cheryl Salter, BSN, RN

Address: 2530 Chicago Ave S – Minneapolis, MN 55404
Phone: (612) 874-1292
Fax: (612) 813-6889
Website: http://www.childrensmn.org

 


University of Minnesota 22q Clinic

Address: 515 Delaware Street SE – 6-296 Moos Health Sciences Tower – Minneapolis, MN 55455
Phone: 612-625-5945

Jackson, MS – 22q Deletion Syndrome Multidisciplinary Clinic

University of Mississippi Medical Center

Address: 2500 N State Street – Jackson, MS 39216
Medical Director: Kimberly Paduda, MD
Clinic Director: Andrew Gunter, MS
UMMC Gennetics Office: (601) 984-1900

Special Note: Meets once a month

Kansas City, MO – Children’s Mercy

The Super Q Express Clinic at Children’s Mercy Hospital

Children with 22q11.2 Deletion/Duplication syndrome have access to a team of expert clinicians, ongoing support, medical care and information at The Super Q Express Clinic at Children’s Mercy Hospital. We pride ourselves on providing comprehensive, long term, individualized diagnostic and management services in Cardiology, ENT/cleft palate, Endocrinology, Gastroenterology, Genetics, Immunology, Sleep and Speech. A social worker and medical coordinator are also present during visits to provide additional support.

A 22q nurse coordinator will assist scheduling your visit. A typical day will offer a family focused approach that allows the patient and family to remain in a single room with providers rotating in for visits. We have snacks and activities to occupy young minds. Any laboratory or other diagnostic services can be obtained in the same building after the visit. Our nurse coordinator will help with any follow up services that may be needed.

Additional medical services can be scheduled and coordinated at each visit. The Super Q Express Clinic is currently being offered on the first Wednesday of each month at Children’s Mercy Hospital Kansas and the second Friday of the month at Adele Hall.

The center was created in 2013 and has served over 250 patients. The clinic sees patients from newborn through the age of 20.

We have developed an adult transition pathway with the University of Kansas Hospital to assist patients and families transitions to adult care.

Visit website here

Requests for Consultation

Requests for consultation at the clinic can be made by a family doctor, pediatrician, or other specialist by contacting:

Pediatric Endocrinologist: Mathew Feldt, DO
Genetic Counselor: Susan Starling-Hughes, MS, CGC

Address: Children’s Mercy Hospital and Clinics – Gillham Rd., Kansas City, MO 64108, USA
Phone: (816) 234-3290 (Genetics)
Phone: (816) 960-8820 (Endocrinology)
Email: superQexpress@cmh.edu

Patterson, NJ – The Regional Craniofacial Center at St. Joseph’s Children’s Hospital

Pamela Martorana, LPC
Manager
Email: MartoraP@sjhmc.org
Phone: 973-754-4302
Fax: 973-754-4330

For information or to schedule an appointment please call
Gretchen Poage
Clinical Coordinator
Email: PoageG@sjhmc.org
Phone: 973-754-2924
Fax: 973-754-4336

703 Main St.
Paterson, NJ 07503
Website: https://www.stjosephshealth.org/

Montefiore-Einstein Regional Center for 22q11.2 Deletion Syndrome

Address: 1250 Waters Place – Bronx, NY

For information or to make an appointment, please call (718) 741-2323

Email  or call (718) 484-5159 Kaitlyn Brown (coordinator) at kaibrown@montefiore.org

 


Syracuse, NY 22q Center

Family-Centered Interdisciplinary Care Services by Upstate Medical University and Syracuse Center

Upstate University Hospital

Medical Director Robert Roger Lebel, MD, FACMG

Clinical Director Eileen Marrinan, MS, MPH

Research Director Wendy Kates, PhD

Syracuse University

Neuropsychological Evaluations Kevin Antshel, PhD

22q Language Evaluation Team Sue Ellen Mayfield, MS, CCC

Contact:

http://www.upstate.edu/22q

For an appointment call 315-464-6580 or Email: marrinae@upstate.edu

Durham, NC – 22q11 Deletion Syndrome Clinic at Duke Children’s

Pediatric Medical Genetics Specialist: Vandana Shashi, MD
Genetic Conselor: Kelly Schoch, MS, CGC

300 Erwind Rd., Durham, NC 27705
Phone: (919) 681-2524
Website: http://www.dukechildrens.org/services/medical_genetics/clinical_genetics_services/#22q11_deletion

Cincinnati, OH – 22q – VCFS Center at Cincinnati Children’s Hospital Medical Center

Director of Clinical Genetics: Howard M. Saal, MD
Co-Director: Robert Hopkin, MD
Genetic Counselor: Bettsy Leech, MS, CGC

3333 Burnet Ave Cincinnati, OH 45229
Phone: (513) 803-1884
Email: 22Q-VCFS@cchmc.org
Website: http://www.cincinnatichildrens.org/service/t/22q-vcfs/default/ 


 Columbus, OH – 22q Center at Nationwide Children’s Hospital

The 22q Center was created in 2011 at Nationwide Children’s Hospital. The center follows over 500 patients with 22q11.2 and serves patients of all ages (0-99), as we know many patients are diagnosed later in life.

The 22q Center at Nationwide Children’s Hospital is located in Columbus, OH. Nationwide Children’s Hospital is the largest Pediatric Hospital and Research Center in America, consistently ranked on U.S. News & World Report’s Best Children’s Hospital Honor Roll. Families travel from around the globe to access services from their comprehensive, coordinated, and compassionate team.

The 22q Center’s multidisciplinary team works together with families of children diagnosed with 22q11.2 deletion syndrome to provide diagnosis and early intervention services in order to optimize care and provide the best outcomes for every child.

The 22q Center team provides comprehensive individualized diagnostic and management services in Genetics, Cardiology, Plastic and Reconstructive Surgery, Speech and Language Pathology, Developmental Pediatrics, Social Work, Nursing, Immunology, Neuropsychology, Behavioral Health, Dentistry/Orthodontics, Audiology, Otolaryngology, Endocrinology, Gastroenterology, Hematology, Neurology, Orthopedics and Psychiatry. The 22q Center at Nationwide Children’s Hospital team is actively engaged in clinical research and quality improvement projects that aim to help professionals and families understand more about the 22q deletion and its impact on affected children. Their team of providers meets face to face monthly to discuss each child’s visit and individual care needs. The center hosts many educational opportunities for our families, including a biennial family conference, “A Healthy You and 22q”, an awareness walk, webinars, and Facebook Live events. If you would like to learn more about the 22q Center at Nationwide Children’s Hospital, or to schedule an appointment please call the 22q intake at 614-722-6448.

All new patients evaluated by the 22q Center team undergo thorough pre-visit screenings in order to prepare a comprehensive evaluation plan to address their individual needs. The Center’s staff coordinates each child’s appointments, allowing families to see all necessary specialists in just a few days. Their Welcome Center supports the unique needs of patients and families arriving from out-of-town, including housing, transportation, financial information and other resources. Once all clinical evaluations have been completed, the 22q Center team meets face-to-face in order to develop a coordinated plan of care for each patient. The 22q Center team follows the Practical Guidelines for Managing Patients with 22q11.2 Deletion Syndrome and coordinates care based on each patient’s individual needs.

Visit the 22q Center at Nationwide Children’s Hospital’s  Facebook page or webpage to learn more about their family conference “A Healthy You and 22q”. This conference is open to all 22q families.

Nationwide Children’s Hospital – 22q Center

Address: 700 Children’s Drive – Columbus, OH – 43205

Phone:(614) 962-6373

Co-Director: Richard E. Kirschner, MD
Co-Director: Dr. Scott Hickey, MD, Pediatric Geneticist
Co-Director: Adriane Baylis, CCC-SLP

Main Contact: Amanda Smith

Email: amanda.smith2@nationwidechildrens.org

Phone: (614) 722-5821

Website 

 

Portland, OR – 22 Clinic at Child Development & Rehabilitation Center at Oregon Health & Science University

George Anadiotis, MD
Contact: Maureen Oliverio, CPNP and Rhiannon Orizaga

3181 SW Sam Jackson Park Rd., Portland, OR 97239
Phone: (503) 494-2069
Email: orizaga@ohsu.edu
Website: http://www.ohsu.edu/xd/health/child-development-and-rehabilitation-center/clinics-and-programs/cdrc-portland-programs/cleft-palate-craniofacial/velocardiofacial.cfm

 

Philadelphia, PA – The “22q and You” Center at The Children’s Hospital of Philadelphia

Director, Donna McDonald-McGinn, MS, LCGC
Medical Director, Elaine H. Zackai, MD
Scientific Director, Beverly S. Emanuel, PhD

34th St. and Civic Center Blvd.
Philadelphia, PA, 19104-4399
Phone: (215) 590-2920
Visit Clinic Website   
Email: genetics@email.chop.edu


Lewisburg, PA – 22q Developmental Clinic at Geisinger’s Autism & Developmental Medicine Institute (ADM)

Associate Director & Clinical Investigator: Brenda Finucane, MS
Contact: Barbara Haas Givier

120 Hamm Dr., Lewisburg, PA 17837
Phone: (570) 522-6287
Email: bahaasgivler@geisinger.edu
Website

Dallas, TX – Children’s Medical Center

Address: 1935 Medical District Dr., Dallas, TX 75235
Phone: (214) 456-2357
Website 

Salt Lake City, UT – University of Utah

John Carey, MD MPH
Genetic Conselor: Janice Palumbos, MS, CGC

Address: The University of Utah – 100 Mario Capecchi Drive – Salt Lake City, UT 84113
Phone: (801) 213-3599

Seattle, WA – 22q Clinic at Seattle Children’s Hospital

Address: 4800 Sand Point Way NE – Seattle, WA 98105
Phone: (206) 987-2208

Craniofacial Clinic

Pediatrician: Emily Galliger, MD

Genetics: Tara Wenger, MD

Special Note: Meets 2nd Friday of each month

Website  

 

Washington, DC – Children’s National Medical Center

Address: 111 Michigan Ave NW, Washington, DC 20010
Phone: (202) 476-6287

Specialist: Dina Zand, MD
Otolaryngologist: Pamela Mudd, MD

Email: cody@uthscsa.edu
Website  

Wauwatosa, WI – 22q11.2 Deletion Syndrome Specialty Clinic at Children’s Hospital of Wisconsin

Address: 8915 W Connell Avenue – Wauwatosa, WI 53226
Phone: (414) 266-2031

Medical Director: Steve Conley, MD (ENT)

LuAnn Weik, CGC

Special Note: See patients once a month

Website

 

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