Power of Together 2 Provides $10K to Sofia Sees Hope

 In News

Ledyard, CT (Sept. 5, 2018) — Power of Together 2, a local crowd-funding group, raised $10,200 from 102 members to benefit Sofia Sees Hope in August. The money will be used to help families from across the country attend Sofia Sees Hope’s first LCA Family Conference in October in Groton, CT.

Power of Together 2 is a grassroots effort to support local nonprofits through financial donations. Members commit to attend a one-hour meeting each quarter, to which they bring a $100 check and, if they wish, can put their name in to speak on behalf of any local 501(c)3 they feel warrants support. Three names are randomly pulled, and each person gets up to five minutes to present their nonprofit. Then all members vote and the winning charity receives the entire pot of individual contributions.

Since forming in 2015, Power of Together 2 has contributed $88,050 to local nonprofits. The group is modeled after one started in Niantic in 2013. Together the two chapters have donated $260,350 to organizations in southeastern Connecticut.

Laura Manfre, co-founder and board president of Sofia Sees Hope, has been a member of Power of Together 2 for some time. At the August meeting, her name was among those pulled. Manfre told the gathering about SSH’s roots in southeastern Connecticut, including the local families they have been able to help, and the upcoming LCA Family Conference, set for Oct. 5-6 in Groton.

The mission of Sofia Sees Hope is to transform the lives of those affected by blindness caused by rare inherited eye diseases. Now in its fifth year, SSH is hosting its first-ever conference for those affected by Leber congenital amaurosis (LCA), a rare genetic retinal condition characterized by severe vision loss at birth and leads to total blindness. LCA affects 1 in every 100,000 births, and there are approximately 4,000 people in the United States with the condition. There are currently 27 genetic mutations identified as causing some form of LCA.

“One of the reasons my husband and I founded Sofia Sees Hope after our daughter was diagnosed with LCA is because we know how challenging it can be for families dealing with a disease that is rare,” Manfre said. “Hosting this conference is a natural next-step as our organization expands its activities to support our patient community and ultimately accelerate research and treatments for them.

“This conference is bringing to Groton experts and panelists from across the regulatory, pharmaceutical and research industries including the FDA, Foundation Fighting Blindness, and several biotech companies from outside Connecticut so that families can learn and become better informed advocates,” Manfre continued. “What we quickly discovered is there are lots of folks who really want to attend the conference, and for some of those, travel costs are a barrier. This grant from Power of Together 2 will allow us to help LCA families travel to Groton to learn and connect with others. Without this grant, we would not have been able to do that.”

Gae Melford of Power of Together 2 stated, “It is so rewarding to witness the impact a group of caring local citizens can have when they come together and combine resources. In just an hour, an individual’s $100 can become $10,000 and really make a difference. It is such an amazingly simple concept. Our quarterly meetings run for just an hour, and are interesting, inspirational and incredibly effective. You just can’t attend one of these meetings without feeling really good when you leave.”

Said Manfre, “Having local support from an organization like Power of Together 2 is a tremendous boost — not just for the families that can now travel to our area to participate in the conference, but also to our team, which includes dozens of volunteers who support SSH from dining room tables and basement offices across southeastern Connecticut. People say, ‘think globally, act locally,’ and that’s what is happening here.  We’re focusing on a rare disease, so we have to think and act globally. The better we get at it, the bigger our local impact is — this includes both helping the individuals we’ve found right here in New London County to making it possible for the single mom with two visually impaired children to travel to Groton for the conference. We are a global organization making an impact right here at home, and we wouldn’t have it any other way.”   

The next Power of Together 2 meeting is 7 p.m., Nov. 13th, at the Mystic VFW Hall on Route 1 in Mystic.

You can learn more about the LCA Family Conference and Leber congenital amaurosis at www.sofiaseeshope.org.

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 genetic retinal 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 eye 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.