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Tom Golisano makes $50 million commitment to the University of Rochester to build the new Golisano Intellectual and Developmental Disabilities Institute

Thursday, June 13, 2024

The gift is the largest single gift in University history and the largest single gift made by Golisano.The University of Rochester announced today that entrepreneur, philanthropist, and civic leader B. Thomas “Tom” Golisano has made a historic $50 million commitment, making it possible to build the Golisano Intellectual and Developmental Disabilities Institute at the University of Rochester Medical Center. The new world-class transdisciplinary center will provide solutions to the health and quality of life issues that affect people with intellectual and developmental disabilities (IDD). Those with IDD are a traditionally underserved population, with approximately 19,000 people affected locally, 120,000 regionally, and 200 million worldwide.

Golisano’s gift will significantly expand the University’s distinctive strengths in IDD patient care, community outreach, and caregiver support programs. These span the University’s schools, institutes, departments, centers, and programs and include such areas as its Complex Care CenterDepartment of NeurologyDepartment of Pediatrics and its Division of Developmental and Behavioral PediatricsLeadership Education in Neurodevelopmental Disabilities (LEND), University Center for Excellence in Developmental Disabilities (UCEDD), Ernest J. Del Monte Institute for Neuroscience and its Intellectual and Developmental Disabilities Research Center (IDDRC), and the Eastman Institute for Oral Health (EIOH).

The gift will also make it possible to bring together these resources within one institute; to become the worldwide gold standard for IDD health, services, and outreach; and to expand and form new regional, national, and global partnerships with leading academic and health care institutions and community agencies.

Golisano’s gift also names the Golisano Specialty Clinic at Eastman Dental Center, which serves nearly 2,000 people with IDD each year.

“Creating a better world for people with IDD has been a passion of mine for over 40 years. I know that this is a shared goal with Golisano Children’s Hospital and the URMC as they have proven through their ongoing commitment and growth in this field of care,” says Golisano. “URMC’s vision for the new Golisano IDD Institute takes that dedication to a new and unprecedented level, putting patients at the center of every focus and providing one-stop integrated care and coordinated customized services. The impact will be an enhanced quality of life and access to care that, before now, has only been a dream for people with intellectual and developmental disabilities and their families.”

Between his personal giving and his foundation, Golisano’s total philanthropy to the University of Rochester Medical Center now nears $100 million. In addition to today’s commitment, in 2002, Golisano donated $14 million to build the Golisano Children’s Hospital (GCH), to help recruit outstanding faculty, and to expand programs in cardiac care, general surgery, neurology, and more. In 2011, he contributed another $20 million to GCH to build a new hospital, and in 2020 made a $5 million gift to establish the Golisano Pediatric Behavioral Health and Wellness Center.

Golisano has given more than $145 million to organizations globally that are dedicated to advancing the health and social inclusion of people with IDD, including Special Olympics and the Golisano Children’s Hospitals in Rochester and Syracuse, New York, and Southwest Florida. Today’s gift marks the largest single gift that Golisano has ever made.

“I am tremendously grateful to Tom for his visionary commitment to IDD, to this University, and to his hometown of Rochester,” says Sarah C. Mangelsdorf, University of Rochester President and the G. Robert Witmer, Jr. University Professor. “His transformative generosity will propel our strengths, deepen our commitment to IDD, and truly change lives around the world. There is no question that those with IDD will have a better, brighter future because of Tom Golisano.”

“As board chair, I speak for all University trustees when I say how grateful we are to Tom Golisano and his foundation for this historic gift,” says Richard B. Handler, CEO of Jefferies Financial Group. “Through his actions, Tom has become the embodiment of President Mangelsdorf’s vision of boundless possibility, as outlined in the University’s strategic plan. This gift will change the University of Rochester, our Medical Center, and our community forever and it will inspire others to follow in Tom’s large footsteps.”

The University has named John Foxe, the Killian J. and Caroline F. Schmitt Chair in Neuroscience and director of the Del Monte Institute for Neuroscience, to direct the new institute. “I couldn’t be happier, more proud, and more inspired to take on this role, providing solutions to the health and quality of life issues that affect people with IDD,” he says. “The institute will serve as a pivotal hub for excellence and will advance, advocate, serve, and champion IDD care, treatments, and education around the world. Thank you, Tom, for this exceptional gift and for changing people’s lives by creating the world’s number-one IDD institute.”

Resources will immediately serve people with IDD while propelling the institute into prominence, allowing the University to accomplish now what it estimates would take 20 years otherwise. Golisano’s gift places the University among the most recognizable centers in the nation today—one of eight with the three core requirements of an IDDRC, LEND, and UCEDD.

Adds Foxe, “Combining our strengths in therapeutic innovation, specialized IDD training, and community partnerships with our exceptional strengths in delivering quality, cutting-edge health care across our specialty clinics will position the Golisano IDD Institute to provide new models of IDD care.”

Foxe also notes that over the past nine years, the University has invested nearly $80 million in IDD programs. “Although our clinical, therapeutic, and educational programs make Rochester an important regional and national resource, we must do more to address the growing needs of those with IDD,” he says. “Tom’s gift will help us close gaps, address challenges, meet demands, and expand educational opportunities, curricula, and community partnerships. We can now purchase the highly sophisticated tools required to allow breakthroughs in diagnosis and treatment, hire and train more professionals, and better meet the growing demand for services.”

Adds David Linehan, CEO of the University of Rochester Medical Center, dean of the School of Medicine and Dentistry, and senior vice president for health sciences for the University of Rochester, “Tom’s generosity is truly transformational. Because of him, URMC can increase our clinical services and access to care—an enormous need in our region—and become the global leader in IDD medical evaluations and diagnoses, the training of IDD professionals, and advocacy, assistance, and consultation programs for the lasting benefit of those with IDD.”

“Our team at GCH includes leaders in patient care, training, research, and community partnerships, all working together to improve care, health, and quality of life for individuals with IDD. Tom Golisano’s gift will facilitate additional growth, collaboration, and coordination to build on this commitment in a way that is unprecedented,” says Jill Halterman, chair of the Department of Pediatrics and physician-in-chief of Golisano Children’s Hospital. “On behalf of the children and families who will benefit from this support, we are so incredibly thankful.”

Eastman Institute for Oral Health Director Eli Eliav adds, “Last year, EIOH was the largest provider of dental care to people with special needs, serving nearly 2,000 patients with IDD from more than 40 New York counties in our community clinics, specialty care clinics, and Strong Memorial Hospital,” he says. “Tom Golisano has supported this work for many years, and we are extremely grateful for the gift he is announcing today, which will enable EIOH to expand clinical services and train more dentists to provide compassionate care that helps people with IDD maintain healthy smiles.”

“Tom Golisano is a true innovator and changemaker. He sees opportunities others don’t, understands the importance of talent and leadership, and brings people together to create solutions,” says Thomas Farrell, senior vice president for University Advancement. “We can all learn from his drive to make our community and the world a better place.”

Plans are underway for the new facility, which will be located on a to-be-determined site on the University of Rochester’s Medical Center Campus.

 

 

Read More: Tom Golisano makes $50 million commitment to the University of Rochester to build the new Golisano Intellectual and Developmental Disabilities Institute

What Families of Children with Medical Complexity Say They Need: Humanism in Care Delivery Change

Tuesday, May 7, 2024

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing.

Read More: What Families of Children with Medical Complexity Say They Need: Humanism in Care Delivery Change

Dr. Adriana Verwey Publishes Updated Inclusive Recreation Brochure

Saturday, March 9, 2024

photo of Dr. Verwey‚ÄčThis week at the 24th annual Anne E. Dyson memorial grand rounds and community health symposium Dr. Adriana Verwey, Assistant Professor Department of Pediatrics, Developmental & Behavioral Pediatrics was the special guest speaker in a discussion about promoting physical opportunities for all children. Dr. Verwey presented her updated inclusive recreation brochure 'A Guide to Recreation and Leisure for All in Greater Rochester'.

"Accessible recreation is a civil right and outlined in ADA accessible design standards" said Dr. Verwey

She empathized that providers who have knowledge of resources are a main facilitator of promoting inclusive recreation for children with disabilities. She discussed the health disparities that exist for individuals with disabilities and how the benefit of physical activity can improve these health disparities. Her research shows that the barriers to exercise for people with disabilities are not only program cost or transportation as would be expected, but nearly 50% of individuals reported they did not know how to exercise and, they did not know where to exercise or what facilities were available to them.

By creating this inclusive recreation brochure Dr. Verwey aims to share her knowledge of resources to accessible recreation throughout the Rochester community. She said,

“There are a lot of opportunities in our community for physical activity for individuals with disabilities”

The interactive map below was created by Dr. Verwey and displays various options for Inclusive Recreation, Dance/Theater/Music/Art, Parks and Playgrounds, and TIES (Together Including Every Student) programming within the various school districts in our region. Although we have a lot here, we don’t have enough here and we need more, she said. Dr. Verwey wants the community to know that there are places you can go! This brochure was supported with grants from the American Academy of Pediatrics, Special Olympics, and The Hoekelman Center. A link to the brochure can be found at the bottom of this article.

Panelists at this event included members of local Rochester businesses and organizations such as - Healthi Kids, Rochester Accessible Adventures, Reconnect Rochester, Abilities Movement, and the Department of Recreation and Human Services

 


 


 

The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration

Monday, January 29, 2024

Photo of Student in EEG Booth

Batten disease is a devastating rare genetic disorder. While the genetic flaw that causes this disease is well known, scientists do not fully understand the connection between this mutation and the disease’s symptoms like behavioral changes, cognitive impairment, seizures, and vision loss. John Foxe, PhD, co-director of the University of Rochester Intellectual and Developmental Disabilities Research Center (UR-IDDRC), recently described a potential neuro marker for the disease that could represent a way to better understand this complex disease and, ultimately, help researchers measure outcomes in clinical trials.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.

Read More: The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration