Word of mouth.
Word of mouth. The best advertising you never pay for and luckily, the exact reason Anne Rugari became a Braughler Books author. At a Graduation Fundraiser in the Sycamore School District, Anne Rugari posted a flyer for her story, Just Like Me. Her children’s book, a tribute inspired by the life of her daughter, Gina Rugari. Gina was diagnosed as a newborn with a rare disease, Krabbe (Globoid Cell Leukodystrophy) causes depletion of myelin in the brain and all other nerves in the body (peripheral and central nervous system’s). Gina was the 4th infant in the world to receive life-saving treatment, an umbilical cord blood transplant for Krabbe, that prolonged her life expectancy by 14 years.
Gina passed away in 2015 at age 15. While grappling with the enormity of her legacy, a friend suggested Anne write a children’s book about Gina’s life.
Just Like Me was born and bred in 9 short months. Rugari commissioned children from a Florida art center to illustrate the book. Groups of children, ages 7 through 18, collaborated to create artwork inspired by the activities Gina enjoyed most.
The book, like the artwork and the author herself, is unique. The unifying theme is one encouraging acceptance in diversity as well as empathy and kindness for people that are differently abled.
“In creating awareness about differently-abled individuals, diversity, kindness, and compassion become a more universally accepted concept. Everyone is just like Gina and has something uniquely special about them.”
A Mother’s Love and Mission Continues
While the book ultimately comes to an end, Anne Rugari continues to pursue a long-term treatment for the disease that claimed two of her children’s lives. As the founder and CEO of Partners For Krabbe Research, co-founder KrabbeConnect and Vice President and Treasurer on the Board of Directors, Anne works tirelessly to educate, create awareness and raise funds for research to give kids like Gina an opportunity for better quality and length of life.
Anne donated Gina’s brain and nerve tissues to be used for research at the University of Pittsburgh Medical Center in order to help find a better treatment for those affected by Krabbe disease. One of Anne’s roles is working as a consultant for the NDRD Brain and Tissue Bank. She works with families who wish to donate precious tissue samples for research and also with scientists who are studying the disease.
I spoke to Anne days before she handed out the Gina Rugari Scholarship Award at Sycamore High School, Cincinnati. This award, which was privately funded and will now be funded by the school board, is given to a senior student who has shown kindness, empathy, compassion to peers that are differently abled.
Anne often finds time to visit with students at all of Gina’s alma mater, Sycamore, Maple Dale, Greene, and Cincinnati Children’s Pearlman School, to spread her mission and Gina’s legacy. Each November, Anne returns to Cincinnati to host an annual fundraising gala she hosts on behalf of Partners For Krabbe Research.
The Next Chapter
When not advocating, consulting, or furthering medical advances through her time and donations, Anne hopes to write another book – this time –the Anne Rugari story and maybe even another children’s book. Admittedly, these things will have to work their way to the top of her priority list which currently include soaking up salt life in the Sunshine State, spending time at the beach, fishing with her son and grandson, boating, bicycling and outdoor activities.
Recently, Anne received a call exclaiming Just Like Me should be in the hands of every parent to educate their children about diversity and differently-abled children. Just Like Me is available for purchase through Partners for Krabbe Research, as well as Amazon, Barnes and Noble and other retailers where books are sold. Proceeds from each book purchase directly benefit Partners for Krabbe Research.