Our Mission: Shwachman-Diamond Syndrome Foundation
Shwachman-Diamond Syndrome Foundation
Shwachman Diamond Syndrome Foundation was founded in 1994 by Joan Mowery, a mother of an SDS patient. Shwachman-Diamond Syndrome Foundation is a national, not-for-profit, patient advocacy organization. Our goals are to advocate and fund research towards improved treatment and a cure.
We provide educational services and emotional support to SDS families. We sponsor a bi-annual family conference which allows patients and their families the opportunity to hear and speak to members of our Medical/Scientific Medical Board, who are experts in various aspects of SDS. We are also proud sponsors of the Shwachman-Diamond Syndrome International Scientific Congress which brings together physicians and scientists from around the world to share the most recent information on SDS. And we support the North American SDS Patient Registry.
We continually strive to raise awareness of SDS in both the medical community and the general population.
Our Mission at Shwachman-Diamond Syndrome Foundation
- Advocate for and fund research towards improved treatment and a cure
- Raise awareness of SDS in the medical community and the general public
- Provide educational and emotional support to patients and their families
- Link families through the Internet and family conferences
- Disseminate current medical information
- Support an International Scientific Congress and the North American SDS Patient Registry
Affiliations
The Shwachman-Diamond Syndrome Foundation is affiliated with the following organizations.
Global Genes
Global Genes is a non-profit 501(c)(3) corporation advocating for rare disease globally. The Global Genes RARE Foundation Alliance is a coalition of more than 750 rare disease organizations and members that believe in the power of collective impact and understand that together, we are more powerful.
NORD
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Genetic Alliance
Genetic Alliance, a nonprofit founded in 1986, is a leader in deploying high-tech and high-touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health.
Shwachman-Diamond Syndrome
Foundation Board
Joan Mowery
Founder
Mary Balint
President
Christian Del Ré
Vice President
John Wall
Treasurer
Deana Valiante
Secretary
Bryan Sample
Legal Advisor
Shari St. Hiliaire
Fundraising Chair
Rev. Tom Dahlman
Board Member
Medical Board
Johanna Rommens, PhD
SDSF Chair
Peter Gilgan Centre for Research & Learning,
Room 14-9712
The Hospital for Sick Children
686 Bay Street
Toronto, ON M5G 0A4
Canada
📧 Mail: jrommens@sickkids.ca
Blanche Alter, MD, MPH, FAAP
Emeritus Advisory Board Member
Division of Cancer Epidemiology and Genetics
National Cancer Institute
9609 Medical Center Drive, Room 6E452, MSC 9772
Rockville, MD 20850
📧 Mail: alterb@mail.nih.gov
Alison Bertuch, MD, PhD
Texas Children’s Hospital
1102 Bates St
Houston, TX 77030
832-824-4579
📧 Mail: abertuch@texaschildrens.org
Lauri Burroughs, MD
Director, Pediatric Non-Malignant Transplant Program
Fred Hutchinson Cancer Center / Seattle Children’s Hospital
1100 Fairview Avenue East, MS D5-280
Seattle, WA 98109
📧 Mail: lburroug@fhcrc.org
Nancy Cincotta, MSW, MPhil
Chief Psychosocial Officer – Richi Childhood Cancer Foundation
Psychosocial Consultant, Narrative Medicine Practitioner
Greater New York City Area
Marco Cipolli
Centro Fibrosi Cistica
Azienda Ospedaliera Universitaria Integrata
Piazzale Stefani 1, 37126
Verona, ITALY
Seth Corey, MD, MPH
Cleveland Clinic Main Campus
9500 Euclid Avenue
Cleveland, OH 44195
216-444-5517
Tarek Elghetany, MD
Professor of Pathology & Immunology and Pediatrics
Baylor College of Medicine / Texas Children’s Hospital
6621 Fannin Street, WB1100
Houston, TX 77030
📧 Mail: txelghet@texaschildrens.org
📧 Mail: elghetan@bcm.edu
Nicholas J. Gloude, MD
Pediatric Transplantation and Cellular Therapy
Associate Clinical Professor of Pediatrics
Pediatric Hematology, Oncology, and Stem Cell Transplant
University of California San Diego
Rady Children’s Hospital
📧 Mail: ngloude@rchsd.org
Amit Grover, MD
Director, Pancreatic Disorders Program
Division of Gastroenterology, Hepatology & Nutrition
Boston Children’s Hospital
300 Longwood Avenue, Enders, 6th Floor
Boston, Massachusetts 02115
617-355-6172
Sioban Keel, MD
University of Washington
1705 NE Pacific St.
Seattle, WA
206-685-2196
📧 Mail: Sioban@u.washington.edu
Daniel H. Leung, MD, FAASSL, FAAP
Texas Children’s Hospital
281-469-4688
Johnson M Liu, MD FACP
Section Head of Hematology
Division of Hematology/Oncology
Icahn School of Medicine at Mount Sinai
The Tisch Cancer Institute
17 E 102nd Street, Room D4-112
New York, NY 10029
212-241-4665
📧 Mail: Johnson.liu@mssm.edu
Charles McCaslin, MD
Nemours Children’s Hospital
807 Children’s Way
Jacksonville, FL 32207
904-697-3676
Kasiani Myers, MD
Assistant Professor of Pediatrics
Division of Blood and Marrow Transplantation and Immune Deficiency
The Cancer and Blood Diseases Institute
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, OH 45229-3039
📧 Mail: Kasiani.myers@cchmc.org
Christopher Reilly, MD
Physician, Adult Leukemia Program
Dana-Farber Cancer Institute
450 Brookline Avenue
Boston, MA 02215
877-442-3324
Akiko Shimamura, MD, PhD
Bone Marrow Failure Treatment Program
450 Brookline Avenue
Boston, Massachusetts 02115
617-919-6109
Garry Tobin, MD
Endocrinology
Washington University in St. Louis
4921 Parkview Place Suite B13
St. Louis, MO 63110
314-747-7300
Professor Alan Warren
Cambridge Institute of Medical Research, University of Cambridge
Cambridge Biomedical Campus, CIMR (The Keith Peters Building)
Hills Road, Cambridge, England
📧 Mail: ajw1000@cam.ac.uk