Motivated by their son’s struggle with a rare multisystem health disorder called geleophysic dysplasia, Ibrahim and Ryann Al-Rashid recently made a $3 million donation to the University of Miami Leonard M. Miller School of Medicine to accelerate research into the little-known condition that has life-altering health consequences.
Ibrahim Al-Rashid, B.B.A. ’06, who lives in Miami, hopes to support others affected by the disorder and galvanize world-wide knowledge and treatment options through UM’s research.
“When my wife, Ryann, and I were told that our son had geleophysic dysplasia, we didn’t know where to turn; there was no information or hope,” said Al-Rashid. “This condition was orphaned like so many other rare diseases. But that hopelessness stops today. We are here for the community and hope that the research at University of Miami will alter the course of those afflicted with this disease.”
The donation will support the Al-Rashid Family Geleophysic Dysplasia Research Fund, in the Dr. John T. Macdonald Foundation Department of Human Genetics at the Miller School.
“We are very grateful to Ibrahim and Ryann Al-Rashid for this extraordinary gift to fund geleophysic dysplasia research,” said Henri R. Ford, M.D., M.H.A, dean and chief academic officer of the Miller School. “Their heart-felt contribution allows us to advance much-needed research into this rare disease and develop the treatment options that can improve and save lives.”
Thanks to the family’s generosity, physicians hope to launch a comprehensive research initiative, which will translate genomic studies and the identification of treatment targets into drug screening and innovative gene-based therapies.
“The University of Miami is one of the top places to study rare diseases; it’s not by chance that we are working on this particular study,” said Mustafa Tekin, M.D., chief of the Division of Clinical and Translational Genetics. “Our team has the experience and expertise, and now thanks to Ibrahim and Ryann Al-Rashid, we can take this work to the next level and get it done.”
Over the years, the Al-Rashid family has supported many initiatives at the University of Miami Miller School of Medicine. Led by the philanthropy of their father, Nasser Al-Rashid, M.D., the Al-Rashid family has donated more than $20 million to UM prior to Ibrahim and Ryann’s recent commitment. Ibrahim’s siblings, Fahad, Salman, and Mohammad, are also participating in the Geleophysic Dysplasia Research Fund donation.
Ryann Al Rashid’s call for accelerated research also includes expanding community engagement to further understand the impact of this disorder. “I continue to seek hope in every avenue possible and know what we find will help others in the community,” she said. “I know God has a plan for my son that is bigger than anything I can imagine. My hope is that University of Miami’s research can help every single person with this rare condition.”
If you, or a family member, have been diagnosed with geleophysic dysplasia and would like to provide the Al-Rashid family and the University of Miami with more information on this condition, please call 305-243-2381.
Geleophysic dysplasia, a progressive condition resembling a lysosomal storage disorder, is characterized by abnormalities involving the bones, joints, heart, and skin. Individuals with geleophysic dysplasia have short stature, short hands and feet, progressive joint limitation and contractures, distinctive facial features, progressive cardiac valvular disease, and thickened skin. Cardiac, respiratory, and lung complications result in death before the age of five in approximately 33% of individuals affected by geleophysic dysplasia.