HackensackUMC Foundation Newsletter To learn more and to join our team, visit us at Spring 2017 - Vol. 3 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. Eli Manning: Our Man of the Year How TKC is Helping To Find a Cure Jon Fitzgerald, Eli Manning, Robert Garrett and Archie Manning The evening before Super Bowl LI, grateful for his devotion to our patients thousands gathered for the NFL and the Tackle Kids Cancer initiative. Honors, an annual celebration of football s best players and coaches. Eli shares our vision in advancing A highlight of the evening was the Tackle Kids Cancer in many ways, presentation of the Walter Payton said Jon M. Fitzgerald, president of NFL Man of the Year Award. This the Hackensack University Medical prestigious honor is given to a player Center Foundation. In 2016, he to recognize excellence on and off issued a matching donation challenge the field. This year, the NFL honored that ignited the community and two individuals, the Cardinal s Larry Fitzgerald, and our own NY Giants Quarterback Eli Manning. We are ecstatic that Eli achieved this incredible honor, said Robert C. Live at the Garden Learn about our new partnership with Madison Square Garden and the Garden of Dreams Foundation pg. 5 Upcoming Events Join #TeamTKC at one of our upcoming summer events pg. 7 exceeded the fundraising goal. We are proud to partner with Eli on this collaborative program. Eli s contributions to Tackle Kids Garrett, co-chief executive officer of Cancer have been enormous. We Hackensack Meridian Health. He is congratulate him on this incredible a valued team member both on and honor, and thank him for his off the field, and we are particularly dedication to Tackle Kids Cancer. Eli Manning with Logan, age 4
A New Light: Photopheresis Treatment in Bone Marrow Transplant Patients In 2016, Jimmy was diagnosed with chronic myelogenous leukemia (CML), Our goal with administering this program is to create a better quality of life for these children. Laura Meyer, RN an uncommon type of cancer of the blood cells. He was successfully treated at the Children s Cancer Institute. Part of his treatment included a bone marrow transplant. However, like many who receive a bone marrow transplant, Jimmy developed Graft-versus-Host disease (GVHD), a serious condition that causes the patient s skin to develop a rash and harden, making movement anywhere from uncomfortable to impossible. In late June 2016, Jimmy started photopheresis treatment at the Children s Cancer Institute. Photopheresis is the process of removing the patient s blood and placing it into a chamber where it is treated with UVA light. The blood is then carried back into the patient s body. The light alters the blood s lymphocytes, thereby decreasing the symptoms of GVHD. This protocol has been used for over ten years in adult patients at Hackensack University Medical Center. Until recently, photopheresis was not available to children, requiring patients to travel out-of-state for care. Because of their lower blood volume, treatment for children poses unique challenges. Lower weight children require donor blood to prime the procedural kit prior to photopheresis. Other challenges include adequate venous access, lower tolerance for fluid shifts as well as need for age appropriate distraction during treatment. Three years ago, when two pediatric patients were deemed good candidates for the photopheresis treatment, the team at Hackensack University Medical Center created protocols that enabled them to be treated locally. Under the supervision of nurses and physicians from the John Theurer Cancer Center, four pediatric nurses were trained to perform the procedure. Xavier, age 7 with Laura Meyer, RN
Currently, there are five patients of various ages undergoing photopheresis treatment, with several others having completed their treatments. Our goal with administering this program is to create a better quality of life for these children, said Laura Meyer, RN. Eva Krynski, RN, explained that frequently, patients display symptoms that make their lives very challenging, such as rashes, contracted joints and gastrointestinal issues. Treatment through photopheresis is intense. Patients come to the hospital twice a week for two to three hours a day over the course of many months. Often, the course of treatment needs to be extended longer. Jimmy noticed improvement after several months of treatment. My rashes cleared up and I was able to move around without being in pain. and supplies. The program provides intensive therapy that really works and improves the quality of life of many of our patients significantly, said Alfred Gillio, MD, co-chair of pediatric oncology and hematology. Jimmy, age 19 Jimmy has set a new goal, to run track again and his Advanced Practice Nurse Nancy Durning invited him to run a 5K in support of Tackle Kids Cancer with her this June. We can t wait to cheer Jimmy on! 7-year-old Xavier suffered from a blood disorder and was treated with a bone marrow transplant. Following his transplant and the development of chronic GVHD, doctors started Xavier on the photopheresis protocol. Xavier s mom Dulce notices a huge difference. He is more active and has more energy, she explained. His skin is doing better, and all of his organs are doing well. Recently, Hackensack University Medical Center was invited to be part of an international research study for pediatric patients with acute Graft-vs-Host Disease (less than 100 days post-transplant). It is being run by Therakos, a supplier of photopheresis equipment The program provides intensive therapy that really works and improves the quality of life of many of our patients significantly. Alfred Gillio, M.D., co-chair of pediatric oncology and hematology To contact a Children s Cancer Institute Specialist please call 551-996-5437
Cameron s Story: Research at Work Kesha sits outside her four-year-old son Cameron s hospital room one morning scrolling through photos and recounting family memories. This is our annual Super Bowl photo, she says. Because Cameron was born right before the big game, we take a picture of him and his father watching the Super Bowl every year. This year we were in the hospital, but that didn t stop us! Cameron and his family, including his parents and 7-year-old twin brother and sister, live in Hackensack, New Jersey. An active, energetic and strongwilled preschooler, Cameron loves cartoons, superheroes, going to the beach, and visiting his grandparents in Florida. In November 2016, Kesha and her husband, Reggie, noticed a red spot on Cameron s eye. After consulting their pediatrician and other specialists, Cameron was diagnosed with Stage 4 Neuroblastoma in December 2016. During an intensive surgery, doctors were able to Cameron, age 4 remove a significant mass from Cameron. Assistant director of the Children s Cancer Institute Cindy Steele, M.D., recognized that Cameron was a good candidate for a research trial being conducted at Hackensack University Medical Center, the only center in the New York metropolitan area offering this research protocol. Cameron is a child who has a very aggressive tumor that historically has not had a very good prognosis, with a relapse rate of about 50-60%. Very few relapsed patients are cured, explains Dr. Steele. As part of this trial, we were able to have genetic sequencing performed on Cameron s tumor. We used that genetic information to match his tumor to one of the six available targeted drugs, which has now been added to his chemotherapy regimen in the hopes of improving his cure rate. Kesha and her family try hard to stay positive. I believe that God made Cameron tough so he could go through this. He has handled everything so well, she said. The family has a strong support system, as well. Kesha s parents stay at home with them on the weeks that Cameron is being treated in the hospital. Following his surgery and chemotherapy, Cameron will undergo a stem cell transplant, radiation therapy, and immunotherapy. At the end of his treatment course, Cameron will begin a 2-year maintenance course using a drug called DFMO, which preliminary clinical data suggests is able to substantially decrease the rate of relapse in high-risk neuroblastoma patients. Dr. Steele explains, Our hope is that by adding the targeted chemotherapy drug and DFMO maintenance to the current standard treatment regimen for high-risk neuroblastoma, we will be able to significantly improve outcomes for Cameron and other children with this disease. The Sohn Conference Foundation has made funding for this trial possible. You can follow Cameron and his family s journey on the Tackle Kids Cancer Facebook and Instagram pages. Cameron is part of #MyTKCJourney, an opportunity for children and their families living with cancer to share their stories, triumphs, and challenges.
Live at the Garden: Tackle Kids Cancer On December 22, 2016, Tackle Kids Cancer formed a partnership with Madison Square Garden and the Garden of Dreams We are truly honored to have the incredible opportunity to partner with the Garden of Dreams Foundation and Madison Square Garden in order to Tackle Kids Cancer. Foundation that aligns the initiative with the Knicks, Liberty and Radio City Music Hall. As the first non-profit to be selected to partner with the Garden of Dreams, we look forward to working together to create innovative and exciting ways to raise money for pediatric cancer research. With this partnership, our patients, families and supporters will have access to world-class events and experiences. Robert C. Garrett, co-chief executive officer at Hackensack Meridian Health
Corporate Partners Tackle Kids Cancer Corporate Partnership program provides opportunities to companies to partner and demonstrate philanthropic support. Microsoft Representatives from over a dozen corporate partners enjoyed a pre-super Bowl Chalk Talk with New York Giants Legend Carl Banks and Offensive Coach Mike Sullivan at the Microsoft Flagship store. Guests heard first-hand how coaches and players use the Microsoft Surface to dissect and learn from plays. Microsoft volunteers also visited our patients, entertaining them with XBoxes and Microsoft Surfaces. Inserra Supermarkets We all Scream for Ice Cream! Inserra Supermarkets delighted our patients and staff with an ice cream party this past March. Employee volunteers scooped and topped sundaes with syrup and sprinkles for ice cream lovers of all ages. ME & EM MVP Ella, along with her mom and friends started a jewelry company ME & EM For Good. This winter, Ella, who is now cancer free, stopped into the clinic to present a check to Tackle Kids Cancer and hand out jewelry to patients and their siblings. A portion of every ME & EM For Good sale benefits Tackle Kids Cancer. For more information about becoming a Corporate Partner Contact: amy.glazer@hackensackmeridian.org
Upcoming Events Summer is a great time to Tackle Kids Cancer. Join #TeamTKC at one of these fun events. Have a great time, while supporting an amazing cause. Corporate Fun Run This summer, thousands of corporate professionals will lace up their sneakers after work for some exercise and team building at the Corporate FunRun 5K races. Teams from companies large and small will compete for fun while raising money for a good cause. Every dollar raised for Tackle Kids Cancer benefits essential clinical care and research needed to find a cure for pediatric cancer. Endurance Race Program Curing pediatric cancer is a marathon, not a sprint. Help us make strides by participating in our Endurance Race program. We have slots available for the New York City Triathlon, New York Marathon, and Philadelphia Marathon. Tackle Kids Cancer will be the official charity of five races: North Jersey 5K June 1 Meadowlands Racetrack Long Island 5K June 13 Bethpage Ball Park Jersey Capital 5K June 15 Mercer County Park New Jersey 5K July 25 South Mountain Recreation Area Hosted by the NY Red Bulls Garden State 5K September 7 Oak Ridge Park PGA/Northern Trust Join us August 24 27 and watch the PGA TOUR s top 125 golfers compete in the first tournament of the FedExCup Playoffs. Volunteer opportunities are available. Contact us at 844-775-KIDS (5437).
HackensackUMC Foundation Join the Red Bulls The NY Red Bulls will be supporting the Children s Cancer Institute at Hackensack University Medical Center by encouraging fans to pledge donations for team performance. Luis Robles with Niamh, age 8 The Red Bulls are donating $100 per save all season long. Learn more at www.fanangel.com/tkc Give Now or Join Our Team Get Involved 844-775-KIDS (5437)