Newsletter. A New Hope: Olivia

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1 HACKENSACK UNIVERSITY MEDICAL CENTER FOUNDATION Spring Vol. 5 Newsletter Our Mission... Tackle Kids Cancer is a partnership of dedicated clinicians, researchers, corporate partners, and community supporters working to fund medical research to find a cure for pediatric cancer. To learn more and to join our team, visit us at How TKC is Working To Find a Cure Mya s Story - Learn how Dr. Derek Hanson is using an experimental treatment to help 11-year-old Mya battle her brain tumor and save her sight. pg. 2 Making Strides - Meet our runners and find out how you can join #TeamTKC. pg. 6 Corporate Supporters - Companies lend a hand to Tackle Kids Cancer. pg. 6 A New Hope: Olivia Olivia walks with determination. Barely two feet tall, she does not let her small stature stop her. At two years old, she is not afraid of letting everyone know what she wants. That fighting spirit is crucial these next few months. Olivia is battling acute lymphoblastic leukemia (ALL) and will be undergoing new, groundbreaking immunotherapy treatment. Spearheaded by Alfred P. Gillio, M.D., director of the Children s Cancer Institute (CCI) at the Joseph M. Sanzari Children s Hospital at Hackensack Meridian Health, this program, provided in collaboration with Novartis Pharmaceuticals and as a member of a network of certified treatment centers, uses the first CAR-T Cell therapy, Kymriah, recently approved by the FDA, to treat children and young adults who have treatment-resistant acute lymphoblastic leukemia (ALL). Eligible patients will have exhausted all standard therapies and have refractory disease or have relapsed. This approach, which harnesses a patient s immune system to fight disease, involves engineering her own immune cells to recognize and attack cancer. This therapy has resulted in long-term remissions She goes into new situations so easily and will always ask the names of all the procedures and medicines. Dory, Olivia s mom in the majority of patients treated to date. Hackensack University Medical Center is the only hospital in New Jersey offering this CAR-T Cell therapy. Tackle Kids Cancer funding supports the implementation of this program at CCI. Olivia originally started her treatment at another hospital. However, when her cancer relapsed in October 2017, Dory, Olivia s mom, reached out to Dr. Gillio and the physicians at the CCI for help. Dr. Gillio was incredible. We were able to have a dialogue. He is very open to being another voice when we transitioned care it was very easy from our perspective. Olivia is a perfect candidate for CAR-T therapy because she relapsed so quickly after bone marrow transplantation and a second bone marrow transplant would likely be Olivia continued on page 3

2 the size of certain neurological tumors. It is Dr. Hanson s hope that adding this experimental drug will treat the tumor more effectively and save Mya s sight. Hearing that the cancer had returned and Mya s sight was fading was devastating for Henry. I can t help but ask why? he said. But, Mya doesn t complain. Her attitude doesn t change. She is still motivated on even the worst days. Just Keep Swimming: Mya s Story Mya is a superstar by any definition. The cheerful 11-year-old, with a smile that lights up the room, is not only an honors student and a talented singer, she is an all-star swimmer setting national records, most recently winning a national competition with her time in the 50 meter butterfly. Mya attends practice daily, regardless of how she feels. She doesn t stop, said her father Henry. It is that motivation and determination that Mya is channeling now more than ever. This young girl is currently battling a brain tumor which is slowly taking her eyesight. This is not the first time that Mya has fought cancer. At 4 years old she was diagnosed with a brain tumor involving her optic chiasm (the spot in the brain where the optic nerves come together.) She had biopsy that showed she had a low grade 2 glioma, which is very treatable. However, due to the location she was at risk for severe side effects from the tumor, particularly vision loss. She was treated successfully with chemotherapy at the Children s Cancer Institute at Hackensack Meridian Health. In November 2017, Mya began experiencing renewed problems with her eyesight. An exam indicated that she has new and significant loss of vision. While her tumor appears stable on MRI, the vision loss has required Mya to restart chemotherapy. Derek Hanson, M.D., Head of Pediatric Neuro-Oncology, enrolled Mya in a phase I drug trial, being funded by Tackle Kids Cancer. In addition to her chemotherapy, Mya receives the medication mebendazole, a decades old anti-parasitic medication shown to decrease While the prognosis for low-grade gliomas is good, their effects can be devastating when they arise in delicate areas of the brain. Very few new treatments have been developed for these tumors in the past two decades, and there is still a need for more effective, less toxic therapies. By repurposing an FDA-approved drug, we have been able to bring a promising therapy into the clinic quickly. As an oral drug with few side effects, mebendazole has the potential to dramatically improve the quality of life for children undergoing treatment for low-grade gliomas, explains Dr. Hanson. The treatment is not without challenges. Mya has some side effects from the treatment, and her eyesight can be quite blurry at times. The good news is that the treatment appears to be working. The tumor has not grown, and her eye exams indicate that her vision is not worsening. Mya, always the achiever, has set her own goals high. She wants to swim competitively in college and then who knows? If I could, I would do everything! she announced enthusiastically. Henry looked at his daughter with love and admiration. She is stronger than I am. She is my hero.

3 Olivia (continued from page 1) very toxic both in the short term and particularly in the long term, explains Dr. Gillio. Olivia is a fun one. She is wise beyond her years. She s an old soul. She makes people laugh with subtle humor. She loves building, having her nails painted, and beading. Dory remarks that she has learned to enjoy stationary activities because she has been confined to a bed or a room for so much of her young life. She goes into new situations so easily and will always ask the names of all the procedures and medicines. She likes to know what is happening and be part of the process. Dory and her husband, John, try to normalize the situation for Olivia and their other daughter, Erica, age 5. Obviously this is something that you don t plan for and once you are in it can t plan anything. You need to let everything go. You are not in control of a situation, said Dory. Doing our own research and making sure we are comfortable with all the decisions being made has been crucial. Dory and John have found a comforting surrounding at Hackensack University Medical Center. There is a team relationship, and the parents are part the care team it s a collaborative effort. The physicians take all aspects of the child s health into account, and treat the family. Joshua Randman, Tackle Kids Cancer Hero by Amy Glazer, Director, Tackle Kids Cancer I met Josh before he had cancer although I don t think either of us remember. Josh was a student at the school where I used to work. Like many middle school students, he was lanky and quirky. He was known as a strong student with a kind heart. He was quiet. He was a regular kid. When I started working at Tackle Kids Cancer two years ago, Josh and his family were reintroduced to me. His mom, Elyssa, recognized me from the school. We hugged and joked about the cruel irony of our reintroduction. That night was the first time I heard Josh speak publicly about his cancer. He told his story to a roomful of fellow patients, all of whom were graduating from high school. He joked about their shared experiences with needles and hospitals. But most importantly, he spoke with them about the future. He challenged his peers to do as he said not to let cancer define who you are Cancer is what I have, he said. Not who I am. After that evening, I was a bona fide Josh Randman fan. I invited Josh to speak at more programs, having him share his story with students, community leaders, professionals, and even on television. Josh spoke about the need for more funding for pediatric cancer research with passion. He transformed cancer from science and statistics to a young man with passions and promise. At an event last July, Josh spoke to a room full of executives. Although weak from treatment earlier in the day, he commanded the room like a CEO. It is an honor for me to represent Tackle Kids Cancer because it has also helped me throughout the course of my treatments, by inspiring me to live each day to the fullest and not let cancer get in my way. Like everyone who knew Josh, when I learned of his passing I was heartbroken. He had a special spark that truly educated and engaged the world around him. His message of courage and determination continues to be inspiring. I keep a photo of Josh on the bulletin board above my desk. He not only represents the reason why pediatric cancer research is critical, he embodies the strength that is needed to fight this horrible disease. Josh once said, Every day I hear about another child who has been diagnosed with a form of cancer, or who has passed away from one. It just doesn t need to be this way. 3

4 Jersey Shore s James F. Ackerman Federation Pledges $300K for Pediatric Cancer Research Over the years, the James F. Ackerman Federation has supported countless initiatives to benefit patients of all ages at Jersey Shore University Medical Center and K. Hovnanian Children s Hospital. Most recently, the Federation made a $300,000 pledge to support pediatric cancer research through Tackle Kids Cancer. The James F. Ackerman Federation, an organization of women who have been dedicated to supporting programs and services at Jersey Shore University Medical Center are the newest partners working to find a cure for pediatric cancer. Funds raised through the Federation s various events, such as their Spring and Fall Card Parties, Gala event at The Algonquin Theater (Manasquan), 50/50 Raffle, Holiday Tree Ornament Sale, and proceeds From left: Joanne Falcone (former first vice president), Sandra Keary (president), Pam Talarico (former president and current secretary) and Tedi Makar (first vice president). from Yesterday s Best Thrift Shop, will be used toward funding the Tackle Kids Cancer program. We sincerely thank the Federation and its membership for being everyday heroes, making the health of our youngest patients their mission. For more information about this generous auxiliary, call Help Us Make Strides - Join #TeamTKC Curing pediatric cancer is a marathon, not a sprint. Help us make strides by participating in our Endurance Race program and run for #TeamTKC in an upcoming marathon or triathlon. Meet one of our runners: #TeamTKC has teams racing in marathons, and destination races throughout the year. Visit TackleKidsCancer.org for upcoming race dates and more information. Interested in a race that isn t listed? Let us know and we can help with registration and other benefits. Running on #TeamTKC has helped me find my own strength through the darkness of pediatric cancer. Ben Guzman, patient father Join our Team contact Lauren Coticchio Willis at: Lauren.Willis@hackensackmeridian.org or

5 TKC All Star: Jill Lindsay Jill Lindsay spends her days educating children. As the principal of Radburn Elementary School in Fair Lawn, NJ, she has dedicated her life to helping children realize their potential and dreaming big. She doesn t take this role lightly, because as she explains, she almost didn t have a future herself. At age 14, she was diagnosed with pediatric cancer, and given just six months to live. Her parents took to her to see Michael Harris, M.D., Section Chief of Cure and Beyond, and former Co-Director of the Children s Cancer Institute, who at the time was working in a different institution. Dr. Harris saved my life, she says. Under his care, Jill not only survived but was able to follow her dreams. Today, she is a wife, a mother, an educator, and an advocate for Tackle Kids Cancer. This past year, Radburn Elementary School became a Tackle Kids Cancer All Star School by raising funds to support pediatric cancer research. As a child I remember what it was like to be scared, and not know if I had a future. I don t want other children to ever feel that way. If we can raise money and do our part, we can make a difference. Jill continues, Every child deserves a chance to grow up. You can make an impact and be a Tackle Kids Cancer All Star Create a fundraiser to qualify you and your team to earn special rewards: Pizza party for your team Award for team captain Giveaways and certificates Check presentation with Tackle Kids Cancer and hospital representatives And more! Contact Lauren Coticchio Willis at Lauren.Willis@hackensackmeridian.org for more information Thank you to our All Star Teams Team #TommyStrong, formed in honor of MVP Tommy, raised $50,000 for Tackle Kids Cancer. The team presented the check and celebrated Tommy at a community event in April. Runners for the Teaneck 5K raised funds to support the Children s Cancer Institute s Child Life Program. Representatives from Anita Ehlers Dance Extensions presented a gift to Tackle Kids Cancer, representing funds that they raised at their annual dance-a-thon. 5

6 We are thankful to our Corporate Partners for their support of Tackle Kids Cancer! 1. On November 28, Tackle Kids Cancer celebrated Giving Day with check presentations from SUEZ Water, Inserra Supermarkets, Inc., and the PGA Kendra Scott Jewelry brought its Kendra Cares Color Bar to the Joseph M. Sanzari Children s Hospital. Patients were able to custom design and make their own jewelry. 3. Valentine s Day was super sweet this year! Melissa from Baked by Melissa cupcakes visited our patients to decorate (and eat!) delicious cupcakes. 4. Partner FedEx regularly hosts craft parties at the Joseph M. Sanzari Children s Hospital staffed by employee volunteers Become a Corporate Partner Tackle Kids Cancer Corporate Partnership program provides opportunities to enhance brand awareness while making an impact in the community you serve. Learn how your company can participate! Matching Program Team-building events Sponsorships Company Outings Collection Drives Contact Amy Glazer, or Amy.Glazer@hackensackmeridian.org. 6

7 June 1 May 31 CORPORATE FUNRUN MEADOWLANDS RACE TRACK Grab your colleagues and spend the evening running in support of Tackle Kids Cancer. Tackle Kids Cancer is the official charity partner of this fun evening. VINEYARD VINES GIVES BACK Shop at any vineyard vines store in New Jersey, New York, or Pennsylvania on Friday, June 1 and 10% of your purchase will be donated to Tackle Kids Cancer. Help Tackle Kids Cancer this summer! Tackle Kids Cancer doesn t take the summer off! Join us at one of our events this summer, and support our mission to find a cure! August 9 SUMMER SAMBA, SON CUBANO Join others for this fun party on New Jersey s waterfront in support of Tackle Kids Cancer. Last year, this sold out event raised over $100,000 in support of Tackle Kids Cancer. Buy your tickets now before it s too late! June NBC4 & TELEMUNDO 47 HEALTH & FITNESS EXPO Bring your family to this annual event held at MetLife Stadium. With dozens of health related vendors, activities for the kids, and autograph signing opportunities there is so much to see and do! Don t forget to stop by the Tackle Kids Cancer booth to purchase your official Giants Mini-Helmet for all your autographs! August THE NORTHERN TRUST PGA Tournament Tackle Kids Cancer is once again the official charity of THE NORTHERN TRUST, the first tournament of the FedEx Cup on the PGA TOUR. This year, the tournament will be at Ridgewood Country Club in Paramus, NJ. You can watch the tournament up close and support Tackle Kids Cancer by volunteering at this year s tournament! The PGA provides a donation to fight pediatric cancer for each Tackle Kids Cancer volunteer. Find out more at 7

8 Shop TKC Gear All proceeds benefit Tackle Kids Cancer Help raise critically needed funds for pediatric cancer research. DONATE NOW Visit TackleKidsCancer.org to donate KIDS (5437)