The often grey and cold winter month of February brings with it two reasons to feel warm and grateful. The Froio and Ferrandino families are deeply appreciated members of the BDSRA community. Both have lost beloved children far too soon in life and both continue to create legacy for them by giving back. As funding partners of the BDSRA, they contribute to further scientific research and ensure the support and education they received is available for other families in the future.
Tony and Katie Ferrandino have been committed to be funding partners and vocal supporters of the BDSRA for more than 10 years. In 2007, their son Drew received his diagnosis and soon after the family created the foundation Drew’s Hope. During the past decade, Tony and Katie have rallied their local community year after year. In the past three years, they have funded $65,000 in Batten disease research in addition to supporting family services. February 3 marked the 3rd Annual Full House of Hope Casino night which raised $23,000 in one, heart-warming and fun night! The couple works hard to secure donations of products and services from businesses to make the event such a success. They do so by powerfully telling their story to others to grow awareness of this disease and pass on what they have learned.
Last spring, Tony spoke at the Global Genes/University of Pennsylvania Rare Patient Advocacy Symposium to share how their family co-funds research projects within BDSRA’s existing infrastructure. He also talked about the behind the scenes work of maintaining a 501(c)3 and shared that if they had the ability to do it all over again, they wouldn’t have gone through the work of creating a family foundation on top of all they were experiencing as a family during that time, but instead piggybacking off of the BDSRA from the start.
The Ferrandino family is one that is quick to say yes to help others and sees that the value of support is immeasurable. It is one of the reasons that they continue to fund support services like the BDSRA Annual Family Conference in addition to research. They have often shared that while at the beginning their energy was focused on finding a cure, in hindsight, the support of this community was what truly got them through the devastation of Drew’s condition and is what continues to fuel their commitment to create a different future for all Batten children.
The Melissa Froio Foundation
The Froio family has been part of the BDSRA community for 18 years. They received their daughter, Melissa’s, diagnosis in 1999 and attended their first conference in 2000. Interestingly, it was a dear friend of the family who found the organization and put Gregg and Paula Froio in touch with the Executive Director of BDSRA at the time, Lance Johnston. After that initial conference experience, they walked away with a desire to support much needed research for treatments in the future. That same year, the Melissa Froio Foundation was created with the purpose of fundraising for BDSRA and the special needs school that Melissa was attending locally, St. John of God.
Through the years, a variety of fundraising tactics were used, 5K’s, candle sales and annual appeals. Their first of 11 golf tournaments was held in 2000 and this year marked the 8th Monte Carlo Night which raised $18,500, surpassing their goal of $15,000! With more than 300 people attending, the event is high-energy, with 40+ raffle baskets, door prizes and everyone feeling grateful to contribute to such a worthy cause.
In a recent conversation with Gregg, he shared that although the BDSRA community is like a “fraternity you never want to join”, they have met incredible people. Melissa’s experiences opened their eyes to what other people go through in life, whether it be illness or another circumstance. It has made them into a family that is always inclined to help others, for example, Paula has left her career as a benefits analyst and is going to work at Melissa’s school, St. John of God.
Next year, the Froio’s will continue their annual fundraising event the last Saturday in February, sharing that they are very encouraged when they think about the history of Batten disease and where things are headed. The year Melissa was diagnosed, 1999, is the same year the CLN2 gene was discovered and today, less than 20 years later, we already have 1 approved treatment. A rare thing in the “rare” disease world.
Drew’s Hope and the Melissa Froio Foundation, filled with hope for the future, continue to be champion of BDSRA’s mission and partners with us in creating a world without Batten disease and a generous community of support for all that experience its impact.
Want to be a BDSRA Funding Partner?
Contact Christina Clark at firstname.lastname@example.org or 614-973-6012.