For Immediate Release
Holliston, MA, February 4, 2020 – The Chan Zuckerberg Initiative (CZI) announced yesterday the Li-Fraumeni Syndrome Association (LFSA) as a recipient of a two-year grant to aid in their work with the Li-Fraumeni syndrome (LFS) community. The LFSA is one of thirty organizations to be awarded a grant for their patient-led approach to supporting community members and financing research for rare diseases.
The grants were awarded as a part of the Rare as One Project, an initiative created by CZI to bring together patients, medical professionals, and the greater medical and advocacy communities to better work towards finding cures for rare diseases. The award recipients were selected from hundreds of applicants from patient-led organizations in a process that began in June 2019. The funds received from this grant will be used to support patient advocates in their efforts to grow their networks, fund research for these rare diseases, and bring together their community from around the world to learn from and with each other through patient driven research.
One of the strongest points of emphasis within the Rare as One Project is the importance of collaboration between recipient organizations to learn from one another how to collectively overcome the unique challenges that face rare disease advocacy organizations. In this new partnership with CZI, the LFSA will be utilizing the mentorship and collaboration portions of the program to develop new strategies for growing their network in the rare disease community, and to better support LFS patients and their families.
LFS patient and LFSA President, Jennifer Perry expresses her sheer excitement to “be selected and afforded the opportunity to learn and grow from this unique collaboration in order to benefit her fellow LFS community members and others facing rare disease diagnoses.” With this in mind, the LFSA is incredibly honored and thankful for the support of CZI in their quest to make a difference and is looking forward to the new opportunities that this grant will bring.
The Li-Fraumeni Syndrome Association is a 501(c)(3) certified organization that provides information, advocacy, and support services for individuals and families with Li-Fraumeni syndrome, a genetic predisposition to multiple types of cancers, often rare, and often early-onset. Childhood cancer is often associated with an inherited susceptibility, and LFS is one of the most significant cancer predisposition syndromes. The organization also raises funds to further cancer-related research and promote optimal care for the LFS community. For more information about the LFSA, please visit www.lfsassociation.org.
The full press release announcement from the Chan Zuckerberg Initiative can be found here.
For more information, please email LFS Association.