It’s a new year and brand-new home for the New England Sickle Cell Institute and Connecticut Bleeding Disorders Center at UConn Health.

The Institute held a large, festive celebratory grand opening and ribbon-cutting for leadership, supporters, and its patient community on January 29.

The newly renovated multi-million-dollar, patient-friendly 12,840 sq. ft. comprehensive care space is located on the fully renovated fourth floor of UConn Health’s Main Building in the Connecticut Tower of UConn John Dempsey Hospital.

Sickle cell and bleeding disorder patients at UConn Health now have a combined Institute as a dedicated place to call home for all their outpatient care needs. The Institute brings the latest innovative care, medications, supportive services, and clinical trials to its patients all in one space that patients can call their home away from home.

“Dedicating a new brick and mortar medical home– a place of healing, a place of nurturing, a place of expertise, a place of guidance, and, honestly, a place of love– will ensure that individuals with sickle cell disease and bleeding disorders will always have a safe place to receive top-notch care into the infinite future—including those not yet born!” shared Dr. Biree Andemariam, founder and longtime director of the Institute at the celebration event attended by over 400 guests including 150 patients and their family members.

The new space marks a formal beginning of a joint home for the care of individuals with sickle cell disease as well as those with inherited bleeding disorders.  Both conditions affect the blood, both are hereditary, both are relatively rare and largely without a lot of doctors and nurses and social workers with experience or comfort in taking care of them. Together, the two programs at UConn Health provide care for patients from all over Connecticut and serve as both a regional and national referral base from physicians across many disciplines, including other hematologists.

The new location has all new equipment such as apheresis technology used for blood transfusions, ultrasound, and EKGs.  It has six large patient rooms, ten infusion rooms, and even a large common area for patients and their families to use.

The Institute, founded in 2009, has served the majority of adult sickle cell patients in the state. Part of the renovation project was supported with a $75,000 generous grant from CHEFA. Uniquely, the Institute with the help of UConn Health’s art curator Andre Rochester hand-selected original artwork of artists from across Connecticut to decorate and brighten its new hallway and room spaces. The artists hail from across the state in Hartford, Bloomfield, Bridgeport, New Haven, Wolcott, and beyond. Plus, one Oakland, California artist shared a beautiful terra cotta sculpture.

“Our new Institute home is absolutely amazing, and the high-quality space definitely matches the high-quality care our patients always receive,” shared the Institute’s Nursing Director Dr. Genice Nelson. “The old hospital space has been completely renovated down to his studs to be a very modern, comfortable, patient-centered, and colorful, warm inviting space for our patients who often spend a great amount of time receiving therapeutic treatments here.”

“We sincerely thank Caryl Ryan, RN, COO of John Dempsey Hospital, Dr. Andy Agwunobi, CEO of UConn Health, Dr. Pramod Srivastava, director of the Carole and Ray Neag Comprehensive Cancer Center, and Dr. Bruce T. Liang, dean of the UConn School of Medicine. Without their strong leadership this new, dream home for our Institute would not be possible. Thank you!” says Andemariam.

Andemariam also pays tribute to her former UConn Health mentor Dr. Robert Bona who was a longtime director of the bleeding disorders program: “This year marks the 50th year since the start of UConn Health’s first Hemophilia Center. Without him, the bleeding disorders program would not have continued to thrive for so many decades, and I would not have been able to launch our sickle cell program back in 2009 without his support and encouragement.”

UConn Health’s Bleeding Disorders Center is one of the longest-running specialty clinical programs in the institution’s history. In fact, it has long been recognized as a premier center for the care of patients with hemophilia and other bleeding disorders and one of only two adult bleeding disorder programs in the state.

“Biree is the visionary that has made this all possible! I want to thank everyone who has come together to make this Institute possible. The number and excitement of the people here today is a true testament to the work of the Institute,” shared Dr. Andy Agwunobi, CEO of UConn Health, in the full Keller Auditorium.

“This Institute opening is a major milestone for us. Congrats to Dr. Andemariam and all of your team,” shared Dr. Bruce T. Liang, dean of the School of Medicine. “For patients, and future patients, hope is right here, right now at UConn Health.”

In 2009, Andemariam first established at UConn Health the New England Sickle Cell Institute after witnessing first-hand the health care disparities experienced by sickle cell disease patients. The Institute is the first and only dedicated outpatient regional center of its kind for managing the painful inherited red blood cell condition to help adults combat the daily suffering associated with sickle cell disease and improve their overall quality of life.

Continued mentorship and support were vital to Andemariam’s ability to develop the world-class Institute, and she credits her chairman and mentor, Dr. Pramod Srivastava, for playing that role, “every single day and every step of the way.” She says, “Most hospital systems don’t have the courage to do what we have done. Dr. Srivastava assured me that we would find a way, and together, we did.”

Andemariam and her team have tirelessly worked to identify more and more sickle cell patients in the surrounding communities to help them better manage their health, reduce their pain symptoms and disease complication risks, and to keep them out of the hospital so they could enjoy their lives more.

The once small program has grown to serve the Institute’s hundreds of patients and has a national referral base. Plus, the Institute’s global collaborations have published evidence-based, best practice guidelines, and the research team is conducting clinical trial testing for promising experimental drugs aimed at reducing the disease’s trademark cell sickling, blood vessel blockages, organ damage, frequent hospitalizations, and premature deaths.

Andemariam concludes, “It was the willingness of UConn Health and School of Medicine leaders, Dr. Agwunobi, Dr. Liang, and Caryl Ryan, who heeded our call to do something extraordinary for the community of individuals with sickle cell disease who had long been abandoned by the medical community.”

Patient Success

One of the many patient success stories of the Institute include Lola Odesina, 40, of Wethersfield. She was born with the painful, inherited red blood cell disease of sickle cell and has been treated by UConn Health since 2007. As a result of her regular, comprehensive care at the Institute she reports that she is thriving.

“In my adulthood I definitely have hit a stride with my health,” says Odesina. “It has a lot to do with the comprehensive care I have received at the Institute.”

Odesina is a pharmacist. Her career path was inspired by her health experience and to work in the health care world to help other people just like her.

“We are all so very excited for the Institute’s new home and the opportunity for sickle cell patients to be served in an enhanced way, and the greater capacity to serve even more patients,” says Odesina. “It is very reassuring to know people here at UConn Health care and always want to help. The Institute has an amazing supportive team that is always there for us and in anyway.”

Odesina is a mom of two young children. She is very grateful and credits the Institute’s care team for helping her safely through each of her pregnancy journeys with excellent coordinated care and communication with her maternal care providers.

For blood disorder condition care at the Institute’s Connecticut Bleeding Disorders Center, one of the many grateful patients is Robert Hoyt, 66, of Naugatuck. He has long turned to UConn Health’s expertise for his blood disorder care since 2008.

He was first diagnosed at 9 months old after hitting his head on his baby crib and the bleeding just wouldn’t stop. He has the most severe form of hemophilia called hemophilia A with inhibitor.

“I have the worst of the worst type of hemophilia. I spent half of my first 11 years of life in the hospital. Back then there were no good treatments. But I survived!” he happily shares. “At about 40 years of age I needed a knee replacement, but another center wouldn’t do the operation due to its dangers. So, I went to UConn and Dr. Andemariam and the care team guided me through. It was so successful I had my second knee replaced.”

Hoyt adds, “Dr. Andemariam is the doctor I have been looking for my whole life. I want to live life to the fullest, to do that you need to take chances. Her and the Institute’s care has allowed me to do that!”

“UConn Health is really on the cutting-edge of helping the bleeding disorder community,” Hoyt concludes. “With today’s medications and technology, life with hemophilia is much easier.”

Hoyt also shared at the ribbon-cutting ceremony other successful health news thanks to the close management of his bleeding disorder condition care by UConn Health’s Andemariam: “I had the first in the nation mitral valve clip repair at Mount Sinai for a hemophilia patient.”

He concluded, “We will see generations of patients succeed at this new clinic.”

Looking to the Future
The Institute, in collaboration with the Blood and Marrow Transplant Program directed by Dr. Kapil S. Meleveedu, is working diligently to bring bone marrow transplant offerings to sickle cell patients.

Also, they are working in earnest to soon bring access to the newly FDA-approved sickle cell gene therapy currently available right now only at a few centers nationwide. They also have several clinical trials open at UConn Health.

Plus, the Institute will continue to train and educate the next generation of health care providers for sickle cell and bleeding disorders.

“We are going to take sickle cell disease treatment to new heights,” shared the Neag Cancer Center’s Dr. Pramod Srivastava with the large crowd of attendees.

The grand-opening event also included a special invocation for the Institute’s new home by the sister of Dr. Genice Nelson. Minister Shevalle T. Kimber, M.Div.  shared a special blessing and prayer for all patients of the Institute to continue to thrive in 2025.  Kimber is co-pastor of The First Calvary Baptist Church in New Haven and serves as the First Lady of the National Baptist Convention, USA, Inc.

“We are filled with gratitude and reverence,” shared Kimber. “We ask for your blessing on the lives these programs will touch. May this be a safe place of healing and hope.”