Papitto Opportunity Connection makes first $1M Innovation Grant to Lifespan Sickle Cell program

Papitto Opportunity Connection Awards First-Ever $1 Million Innovation Grant to Support Lifespan Comprehensive Sickle Cell Program

The Papitto Opportunity Connection (POC) announced it is investing a $1 Million Innovation Grant to the Lifespan Comprehensive Sickle Cell Program, which will allow for expansion and enable it to become a regional leader and a national model for sickle cell care.

Sickle Cell Disease is a life-threatening inherited blood disorder affecting more that 100,000 Americans and millions worldwide. Nearly all patients with sickle cell disease (SCD) are Black or Latino, and nationally the disease is woefully understudied and underfunded. Currently, approximately 300 Rhode Islanders suffer from sickle cell disease, with more children born each year with the disease and identified by the state’s newborns screening program.

“POC was founded on the premise of creating real change in communities with the most need in Rhode Island,” said John Tarantino, Managing Trustee of the Papitto Opportunity Connection. “The expansion of the Lifespan Comprehensive Sickle Cell Center will directly address the inequity in healthcare faced by those who suffer with this disease – due to lack of access to treatment and lack of funding for this disease. POC strongly encourages other foundations in Rhode Island to join us by investing funds in this program. Working together, we can create a solution to this inequity, one that benefits our entire state.”   

According to the Foundation, “Although the disease has been recognized for longer than a century, the development of sickle cell disease therapies has faced significant obstacles, largely stemming from insufficient research funding that many researchers and scholars have attributed to systemic racism.”

“For too long, sickle cell disease has been ignored and not made a priority within the healthcare system in Rhode Island and across our country,” said Patrick McGann, MD, Director of the Lifespan Comprehensive Sickle Cell Center at Rhode Island and Hasbro Children’s hospitals.” This initial contribution from the Papitto Opportunity Connection is a testament that we are taking sickle cell seriously and will continue to strive to make Rhode Island the best place to receive sickle cell care in the world through innovative and patient-centered solutions. This funding is only the beginning of a long journey.” 

Most children diagnosed with SCD now survive into adulthood. But as they transition from childhood to adulthood, there are a lack of programs and resources, resulting in an unacceptable premature mortality rate for young adults with this disease. Studies have shown that the lifetime medical costs for SCD are well over one million dollars per individual. 

With support from the Papitto Opportunity Connection, the Lifespan Comprehensive Sickle Cell Program will enable further enhancements in support and care for those suffering from sickle cell disease across Rhode Island.

Since it was established in December 2020, POC has supported hundreds of nonprofit organizations in our state. POC focuses on supporting programs that create transformative change and in June 2024 launched the $1 Million Innovation Grant. The Lifespan Comprehensive Sickle Cell Center is the first to receive this POC Innovation Grant. 

About the Papitto Opportunity Connection: 

The Papitto Opportunity Connection (POC) is a non-profit private foundation dedicated to listening and working together with Rhode Island’s communities in need to empower and create systemic change by investing in education, job skills training, health care and entrepreneurship. Established in December 2020, POC has provided support to hundreds of non-profit organizations across the state and invested nearly $100 million dollars to support programs that provide crucial services to uplift Rhode Island’s communities in need. Learn more at POCFoundation.com. 

About the Lifespan Comprehensive Sickle Cell Center:

The Lifespan Comprehensive Sickle Cell Center at Rhode Island Hospital and Hasbro Children’s Hospital has provided exceptional care to both adults and children living with sickle cell disease, since 2021. The center’s experienced team of medical professionals offers a wide range of advanced treatments, including gene therapy, vaccines, hydroxyurea therapy, blood transfusions, and bone marrow transplants, to individuals with sickle cell disease across Rhode Island, Massachusetts, and Connecticut. The center is committed to delivering comprehensive care and conducting cutting-edge clinical research from diagnosis through adulthood. Its multidisciplinary team is devoted to addressing every aspect of a patient’s well-being, providing both medical and psychosocial support to cater to the diverse needs of the patient population.

More information on Sickle Cell Disease – https://www.sicklecelldisease.org/