Marisa Tufaro Foundation commemorates namesake’s birthday, announcing it has donated more than $100,000

On what would have been its namesake’s 16th birthday, The Marisa Tufaro Foundation commemorates its second anniversary today, announcing the nonprofit has donated more than $100,000 to help pediatric patients and other children in need throughout the greater Middlesex County area.

In just two years, the foundation, through the remarkable generosity of others who have donated or participated in fundraising events, has made a profound impact, enabling Marisa’s parents, Cyndi and Greg, to give back to the residents of a community that has long provided their family with overwhelming love and support.

The Marisa Tufaro Foundation, which makes community service an integral part of its mission, has also spearheaded multiple community initiatives, resulting in the collection of thousands of toys, nonperishable food, winter coats, baby supplies and other items for donation upon which the nonprofit has placed no monetary value.

The foundation has awarded 17 college academic scholarships in Marisa’s name to high school seniors and an additional 13 scholarships for middle school and elementary school students to attend a weeklong summer art camp at Rutgers University’s Zimmerli Art Museum.

The nonprofit has benefited from dozens of fundraisers, some of which have become annual events, ranging in size from tiny lemonade stands on suburban streets to Greater Middlesex Conference-wide all-star games and tournaments in which student-athletes from the entire league have participated.

The Marisa Tufaro Foundation, which is committed to being a source of comfort to hospitalized children and their families, as well as providing assistance to underserved children, has partnered with other local nonprofits who share its mission.

The foundation has assisted multiple families whose children are in medical crisis, providing financial support through the payment of medical and/or personal expenses to help lessen the burden of parents who have lost wages while spending time at the hospital. Respecting their privacy, the foundation never divulges the names of those individuals or the dollar amount of assistance it provides.

Marisa received outstanding care from the staff and physicians at Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital in New Brunswick, Saint Peter’s University Hospital in New Brunswick, Children’s Hospital of Philadelphia, New York-Presbyterian Morgan Stanley Children’s Hospital, Boston Children’s Hospital and from some of the outpatient services Children’s Specialized Hospital provides.

The foundation has been blessed to give back to each of those hospitals by paying forward the kindness of others.

The foundation, which has been featured in numerous publications, including the print edition of the Boston Globe and online at USA TODAY, is a fitting way to keep alive Marisa’s indomitable spirit and to allow her legacy to be one of helping others.

Robert Wood Johnson University Hospital featured the foundation in the Spring 2019 edition of its Healthy Together magazine, while Children’s Specialized Hospital profiled the nonprofit in its most recent annual report, released earlier this month. News 12 New Jersey’s Della Crews featured The Marisa Tufaro Foundation on one of her weekly Spotlight New Jersey broadcasts.

The foundation has conducted several high-profile events including a boardwalk-themed Family Fun Night for pediatric patients and their families at a children’s hospital, a Day at the Ballpark for Special Olympic athletes and their families which Teamwork Unlimited Foundation co-sponsored, and a Holiday Knight toy drive at an Old Bridge High School football game.

Marisa, who would have been entering her junior year at Edison High School, was born with a complex cardiac defect that required six open-heart surgeries. Despite being hospitalized for more than two years and maintaining hundreds of doctor’s appointments, she lived a vibrant life that inspired. After her sixth surgery, Marisa developed two life-threatening conditions that necessitated a heart transplant. A postoperative complication developed into a rare form of cancer – known as post-transplant lymphoproliferative disorder (PTLD) – that riddled her brain and body. Marisa succumbed to her illness following a valiant battle on Jan. 30, 2017. She was just 13 years old.

Earlier this year, Marisa’s parents were privileged to attend a first-of-its kind patient and caregiver advisory board meeting in Houston, during which a small but dynamic group of survivors of PTLD and family members who lost loved ones to the rare form of blood cancer convened.

Atara Biotherapeutics, a San Francisco-based biotechnology company in late-stage development of an immunotherapy called tab-cel, which may have been able to prevent Marisa’s death, conducted the meeting in conjunction with a national conference known as the Transplantation and Cellular Therapy Meeting of the American Society for Blood and Marrow Transplantation (ASBMT) and Center for International Blood and Marrow Transplant Research.

During the advisory board meeting, Cyndi and Greg recounted Marisa’s courageous journey and valiant battle, giving her a powerful voice to potentially impact the diagnosis and treatment of PTLD.

The Marisa Tufaro Foundation has since created a PTLD resource page on its website to assist patients diagnosed with the disorder and their families.

The foundation’s eight-member board of trustees features Senator Patrick J. Diegnan Jr., Greater Middlesex Conference Executive Director Frank Noppenberger and Dr. Joseph Gaffney, Associate Professor of Pediatrics and Division Chief, Pediatric Cardiology at Robert Wood Johnson Medical School and Robert Wood Johnson University Hospital.

As a small nonprofit, The Marisa Tufaro Foundation distinguishes itself from others, publishing complete stories about fundraising events and full profiles of scholarship recipients on its website. The foundation has published nearly 150 stories, all of which are shared on the nonprofit’s Twitter and Facebook pages.

Marisa’s parents are grateful beyond words for every single penny and every single second of time that has been donated to the nonprofit bearing their daughter’s name.

Blessed with incredible support, Cyndi, a longtime Edison Township Public Schools educator, and Greg, a sports writer with the Home News Tribune and MyCentralJersey.com, will never find the right way to express their appreciation. They can only hope the foundation’s actions speak louder than words.

Cyndi and Greg respectfully ask readers to consider clicking on any of the links below to learn about some of the ways The Marisa Tufaro Foundation has made a profound impact on children in need.

• Established a fund at Children’s Hospital of Philadelphia, from which Marisa received outstanding care for her entire life, to provide financial support to families of pediatric patients from Middlesex County in medical crisis by helping to pay medical, personal or incidental expenses.

• Partnered with the Middlesex County Association of School Administrators to offer financial relief to parents of children in medical crisis who lost wages while caring for their child at the hospital, who lack health insurance or whose provider won’t cover certain medical expenses.

• Donated to Bristol-Myers Squibb Children’s Hospital’s newly established extracorporeal membrane oxygenation (ECMO) program, a specialized cardiac and respiratory support system that saved Marisa’s life at another medical facility following her heart transplant.

• Conducted a boardwalk-themed Family Fun Night for consecutive years at PSE&G Children’s Specialized Hospital, where the sights, sounds and smells of the Jersey Shore were brought to patients and their families through carnival games, food, prizes, music and more.

• Partnered with Teamwork Unlimited Foundation to treat Special Olympics athletes from the Raritan Bay Area YMCA to a Somerset Patriots game experience.

• Funded the purchase of brand-new metal bunk beds for campers at Kiddie Keep Well Camp, which serves more than 600 underserved Middlesex County children annually.

• Partnered with Old Bridge and South Brunswick high schools to collect thousands of toys for pediatric patients at Saint Peter’s University Children’s Hospital and Bristol-Myers Squibb Children’s Hospital.

• Partnered with the Kittim N. Sherrod Foundation to provide a youth football and cheerleading organization with a bilingual state-of-the art automated external defibrillator, as well as AED and cardiopulmonary resuscitation training for adult members of the organization.

• Supported instruction and supplies for an art therapy program at Bristol-Myers Squibb Children’s Hospital, to which our foundation also provided funds for infant mobiles and toy cars staff use to transport children to the operating room for surgery.

• Provided money for equipment and supplies for students with disabilities who utilize the Lakeview School’s newly constructed aquatics center.

• Partnered with Teamwork Unlimited Foundation to provide medical alert bracelets to children with autism and pediatric patients with chronic illness who receive outstanding care from Children’s Specialized Hospital, which annually serves more than 34,000 children statewide.

• Partially funded the Make-A-Wish of a Middlesex County boy who is winning a battle with high-risk neuroblastoma to vacation with his family at Walt Disney World.

• Provided physical therapy at Special Strides Therapeutic Riding Center and Project Walk for Middlesex County children whose families do not have health insurance or whose families’ health insurer does not cover the cost of the physical therapy.

• Partnered with Edison High School and the Chamberlain College of Nursing for two consecutive years to raise money and collect nonperishable food items to benefit Middlesex County children and their families through Hands of Hope via our foundation’s participation in the Race to Outrun Hunger.

• Provided new iPads and gaming system accessories (Xbox and PS4 games, controllers, chargers) for adolescent patients at Bristol-Myers Squibb Children’s Hospital.

• Funded the purchase of uniforms (shirts and shorts) for campers at Kiddie Keep Well Camp, which serves more than 600 underserved Middlesex County children annually.

• Partnered with Woodbridge High School and the Central Jersey bowling community to deliver hundreds of toys to pediatric patients at Morgan Stanley Children’s Hospital, where Marisa underwent a successful heart transplant.

• Partially funded the Make-A-Wish of a Middlesex County girl who was born with a complex cardiac defect to vacation with her family at Walt Disney World.

• Provided 13 summer art camp scholarships to Rutgers University’s Zimmerli Art Museum for Middlesex County elementary and middle school students.

• Rewarded three high school students for their community service to children with college academic scholarships.

• Provided a total of 14 college academic scholarships to Greater Middlesex Conference student-athletes whose classroom performance and extracurricular involvement reflects Marisa’s educational success and whose charitable endeavors align with our foundation’s mission.

• Sponsored a Middlesex County elementary school’s field trip to Special Strides Therapeutic Riding Center in Monroe, where students from self-contained autistic classes were afforded the opportunity to interact with horses and baby goats.

• As a way of giving back to the Rutgers University baseball program, whose roster features several players that have supported our nonprofit, our foundation matched the Scarlet Knights’ fundraising efforts with a donation to Bristol-Myers Squibb Children’s Hospital’s child life program.

• Made a donation in honor of Piscataway’s Conackamack Middle School, which honored Marisa during its 27th annual Turkey Trot, to the township’s FISH Hospitality Program, which provides shelter, meals, clothing and other services to homeless families in Middlesex County.

• Paid forward the generosity Bishop Ahr High School has bestowed upon our foundation with a donation to the school-community’s 21st annual Ahr Star spaghetti dinner, whose beneficiaries included a 9-year-old boy from Middlesex County with multiple disabilities.

• Provided James Monroe Elementary School students with food items to fill a hundred “Weekend Snack Bags” for pediatric patients’ families.

• Provided meals and goods for families staying at the Ronald McDonald House of Central Jersey.

• Partnered with Middlesex High School to conduct a coat drive for Middlesex County children.

• Provided gift cards for pediatric patients and their families.