Sofia Sees Hope Receives Grant From Sanofi Genzyme

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Sofia Sees Hope, a nonprofit dedicated to assisting those with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs), has received a $22,000 grant from Sanofi Genzyme, a biotechnology company based in Cambridge, Mass., that focuses on developing specialty treatments for rare and other debilitating diseases.

This is the first grant Sanofi has awarded Sofia Sees Hope, which was founded five years ago.

The grant will be used to sustain and expand SSH programs and activities that support the LCA and IRD patient communities. SSH programs aim to connect patients for support and to improve their level of understanding and education. The organization’s ultimate goal is an educated and empowered patient community that is able to accelerate research for treatments and cures with improved access to genetic diagnosis and counseling, connections to other affected families and individuals, and participation in patient registries.

“This grant comes at an opportune time for Sofia Sees Hope,” said Laura Manfre, co-founder and Board of Directors president. “As we enter our fifth year we are expanding our repertoire to add more programs for patients and families within the LCA and IRD communities. This funding will allow us to move forward on several key points in our strategic plan and within our mission. We thank Sanofi Genzyme for their wonderful support.”

Specifically, the grant will help support:

  • Ongoing development of patient resources
  • SSH website and quarterly newsletter
  • SSH Ambassador Program, which recruits and trains members of the LCA community to advocate and speak on behalf of the community
  • Dinner in the Dark, SSH’s annual signature fundraiser
  • Operational expenses to support SSH programs
  • SSH Family Connections Program, which connects individuals and families within the LCA and IRD communities for support
  • LCA Family Conference on October 5 and 6, hosted by Sofia Sees Hope, to bring together the patient community to receive information, connect with others and learn about the research that is happening for LCA.

About Sofia Sees Hope

Sofia Sees Hope was founded in 2014  by Laura Manfre and Charles Priebe, whose daughter Sofia has Leber congenital amaurosis (LCA). This rare degenerative genetic condition is characterized by severe vision loss at birth and leads to total blindness.

The mission of Sofia Sees Hope is to transform the lives of those affected by blindness caused by rare inherited retinal disease. The nonprofit organization generates awareness, raises funds for research, and provides outreach, support and education to those affected by LCA and other rare retinal diseases.