At the heart of NexTGen are patients, families and their stories. Each advocate brings their own experience and perspective of solid tumours whether a parent or a patient. We are united in our passion and drive to enable research that leads to new scientific discoveries. Research that can lead to an improved prognosis with kinder and less toxic treatments. We are a constant reminder of why this research needs to happen.
We are an international team with wide-ranging advocacy experience. This enables idea generation, education and the continued evolution of the role patient advocates can play along the research pathway. It also allows access to worldwide advocacy networks across childhood solid tumour disease types, geographic locations and professional paediatric cancer bodies.
Finally, we bring our own professional experience which can help shape our advocacy roles on NexTGen. These skillsets help contribute to delivering the objectives of the NexTGen patient involvement and engagement plan.
Please click on the button to learn more about the NexTGen advocacy team and our goals and hopes for the research.
My daughter, Margo, died on the 7th June 2010 after a 16-month battle with a glioblastoma brain tumour. She was 14 years old. During her illness, she gathered 103K euros that were given to Gustave Roussy for research on her cancer.
Our son, Ben, was stolen by alveolar rhabdomyosarcoma in June 2019, age 7, just one year after being diagnosed. His treatment was led by Birmingham Children’s Hospital, UK and involved the intensive chemotherapy IVADo protocol.
My son, Evan, passed away at the age of seven in 2010 after courageously battling stage IV, n-myc amplified neuroblastoma for four years. He was my only child. The relentless assault of neuroblastoma and the relentless brutality of Evan’s treatment drives me to be an advocate for children with solid tumors. The status quo is completely unacceptable and kids like Evan should be the highest priority in cancer research.
Abbe was diagnosed with Stage 4 rhabdomyosarcoma at the age of ten in November 2010. After almost two years of receiving chemotherapy and radiation treatment, Abbe went into a successful remission. Now, a decade later, Abbe participates as a patient advocate for NexTGen while working as a laboratory technician at UPMC Hillman Cancer Center. She also volunteers on an advisory committee for the Adolescent and Young Adult Oncology Program at Children’s National Medical Center.
Patrick Sullivan became a passionate childhood cancer advocate after he heard the word “incurable” for the first time in May 2008. His desire to make a change in cancer research is in part an effort to pay an un-payable debt to his son Finn and to Change the Stories of other Finn’s. By profession, Patrick is a securities and corporate-commercial litigator. Patrick is the proud father of three remarkable children, Baird, Sarah and Finn and would do almost anything for the simple pleasure of holding Finn’s hand again.
Sara is proud to be a passionate and dedicated childhood cancer advocate. Driven by her daughter, Alice's almost five year journey with rhabdomyosarcoma, which resulted in her death in October 2019. Sara has experienced the highs and lows that cancer brings. Six months after Alice's diagnosis, she co-founded the rhabdomyosarcoma cancer charity, Alice's Arc and is the CEO. Sara holds several other PPI/E roles including working as a consumer member of the NCRI Novel Agents group and as a parent member of the European Paediatric Soft tissue Sarcoma Group (EpSSG). Sara has an Honorary Contract as a PPI/E Research Assistant at the Louis Dundas Centre for Palliative Care.