A University of Louisville College of Business professor and his wife have created a new fund to help families with children who are patients of the UofL Physicians-Pediatric Cancer and Blood Diseases clinic.
Donations are being accepted by the fund which has been set up to help families pay for expenses not covered by insurance and to help improve the clinic’s ability to treat patients. Approximately $16,000 of the $50,000 goal the family has set has been raised thus far.
The Dr. Salvatore Bertolone Pediatric Hematology/Oncology Fund has been created by Michael Barone, PhD, professor of marketing, and his wife, Geneva, to assist families with children who are patients of Salvatore J. Bertolone Jr., MD, and other physicians at the clinic. Bertolone is a specialist in pediatric cancer and blood diseases with UofL Physicians and chief clinical operations officer for subspecialties with the Department of Pediatrics at UofL.
Nicknamed the “Noah and Dr. B” fund on Facebook and GoFundMe, the fund is named for Bertolone and the Barone’s 16-year-old son, who has been battling a rare brain disorder, inflammatory pseudotumor (IPT), since 2006. Bertolone has treated Noah since the family moved to Louisville from Iowa shortly after his diagnosis.
IPTs are non-cancerous lesions that can affect organ systems but originate in the central nervous system. In Noah, the IPTs have attacked his brain stem, affecting his ability to move, speak, see and maintain balance.
A variety of treatments were prescribed for Noah before Bertolone hit upon a chemotherapy-type drug known as Revlimid® (lenalidomide) and another chemotherapeutic agent, VP-16.
“We kept looking, and then decided to try an anti-inflammatory,” Bertolone said. “Now, Noah is in school every day. He’s walking, and we hope he can keep his disease at bay.”
“After these treatments, Noah saw improvement in just a week’s time,” said Geneva Barone. “His speech is better, his whole body is more mobile, and he has more energy.”
“During the summer, he worked hard in physical therapy, and his balance, strength, endurance and ability to get around greatly improved,” Michael Barone said.
Noah, who is a junior at North Oldham High School, said, “I believe that this disease has been a blessing in disguise because it has allowed me to have relationship with great people such as Dr. B and the others at the clinic. The care I have received there has made me want to help other kids at the clinic and their families deal with their diseases.”
Noah’s success as a patient of Bertolone’s inspired the family to give back. In December 2014, Michael and Geneva made an initial gift of $10,000 to start the Noah and Dr. B fund, which assists the families of Bertolone’s patients with expenses not associated with their treatment but are just as necessary.
“We know not every family has the means for all the expenses associated with a serious illness of their child,” Michael Barone said. “The fund we have set up is designed to help with those ‘extras’ – gas money, transportation, meals – as well as medical-related expenses that aren’t covered by their health plan.” To date, the fund has been used by the clinic to purchase new infusion pumps used in treatment and to help some families with first-time prescription co-payments.
“We’re looking forward to raising more funds and seeing those monies being used to help the clinic and families in more ways. We have just recently been selected a Kentucky Derby Marathon Charity and are looking for other ways to raise money for the fund. Bottom line, we just want the fund to help families have less to worry about,” he said. “They already have so much to worry about as it is.”
“The fund that Noah’s family has set up is just so typical of that family,” Bertolone said. “They have seen the needs of the patients and the parents in the clinic, and they are just such loving, wonderful people.
“In spite of this overwhelming disease that their son has, they look out and say, ‘What can we do for others who come here (to the clinic) and help make life a little better for them?’”