CFMC’s Avery Fund Raises Awareness for CDKL5

If it matters to you, it matters to us.  That’s one way we describe the Community Foundation of Middlesex County.  We are a “grassroots” organization, founded 18 years ago by a group of local residents who came together and pooled their resources to support issues that matter to people in Middlesex County. We continue that can-do spirit today, fulfilling the passions of donors and meeting specific needs of our neighbors.  Here are just two examples of how we work with good people doing great things in Middlesex County.

Five years ago, Old Saybrook residents Mark and Kristin Leopoldino reached out to the Community Foundation to establish Avery’s Fund, named in honor of their daughter Avery Rose who suffers from a rare genetic mutation called CDKL5. Their goal was to raise awareness and funds for research.  CDKL5 is so rare that it does not have a name, only letters and a number referencing the genomic location. Most children affected suffer from seizures and are unable to walk, talk or feed themselves. Many also suffer from visual impairment, sensory issues, and other difficulties. With Avery’s older sister Morgan, the family began fundraising with a simple lemonade stand outside Bill’s Seafood restaurant in Westbrook.  They now host several annual events, including the “Avery Rose Hope-Love-Cure-Ride”, and have gained the attention and support of the greater shoreline community.  In fact, in 2012, Old Saybrook Middle School students Mara Kelley and Leah Wysocki donated their birthday and holiday gift money to Avery’s Fund and formed a special bond with Avery.  To date, over $250,000 has been granted to the Foundation for CDKL5 Research and organizations working on finding a cure for Epilepsy and seizures.

We are fortunate to have a wealth of medical care options in our community but medical care only helps if you can get to the appointments. Unfortunately, many in our region cannot. For 45 years, Friends in Service Here (FISH) has been addressing this need by providing free rides to and from medical, dental and physical therapy appointments for elderly and disabled residents of Chester, Deep River and Essex.  A small but dedicated group of volunteers use their own vehicles and pay for fuel and maintenance out of their own pockets. Amazingly, they provide up to 800 rides per year, five days each week. While the number of requested rides has grown significantly, FISH has kept its expenses low, and the Community Foundation of Middlesex County is proud to have supported these faithful volunteers through grants that cover their minimal expenses.  We are grateful for the many drivers who have long tenures of dedicated community service and who are recognized by medical providers and service agencies as a courteous, on-time and caring.  They are making a real difference in so many lives.

The desire to do good things comes in all ages, all sizes, and all interests. At the Community Foundation, we help our donors support the organizations that match their interests and passions.  It is community building at its best. We invite you to learn more by calling us at 860-347-0025 or emailing us at

This article was previously published in August, 2015,  in both the Valley Courier and the Harbor News.

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