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Help and Hope Happen Here
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Help and Hope Happen Here

Author: Mark Levine

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This Podcast is going to be about Pediatric Cancer and the need to keep the awareness of this terrible disease in the public eye. My plan is to be able to interview a wide spectrum of people who all have a passion and a stake in finding a way to make the lives of these Pediatric Cancer Patients easier. I will interview oncologists, nurses, recovered patients, parents who have had to oversee their children's cancer fight, heads of Pediatric Cancer Foundations and Organizations , and others who would like to use this forum to advocate for these children.
118 Episodes
Gabriella Miller lived less than one year after her diagnosis of DIPG in 2012. During that time, she was able to become a passionate advocate for the cause of Pediatric Cancer, including a memorable statement just 2 weeks before she passed away as she implored Congress to "STOP TALKING AND START DOING" Shortly after that House Majority Leader Eric Cantor, helped to push through legislation that he named the Gabriella Miller Kids First Research Act  that was signed into law by President Obama in 2014.Her mother Ellyn will talk about Gabriella , and will also discuss her own advocacy work which started with the Gabriella Kids First Research Act and has continued through her recent testimony given on Capital Hill, about the Gabriella Miller First Research Act 2.0. As a major voice on Capitol Hill for this Pediatric Cancer cause , Ellyn's work has produced and is producing major legislation that is making a very positive difference in the lives of kids who need it the most.
After a 31 year career as an executive at IBM , Mark Weiss decided to start a non profit that would bring passion and help others. This non profit, COMIC BOOKS FOR KIDS is now the largest charity for Comic Books in the country. Mark will talk about how he started this non profit in 2017, and the steps that he took to get his organization to where it is today. The bottom line is that it has helped brighten the days of Pediatric Cancer patients in 180 hospitals across the country as they endure their individual cancer treatments. 
Courtney Durante's daughter Lilli was diagnosed with an Optic Pathway Glioma Brain Tumor when she was 4 years old. Lilly decided to wear a different costume to each of her year long chemotherapy sessions . Now 7 years old, Lilly is doing very well health wise. In honor of Lilly, Courtney started the Non Profit COSTUMES FOR COURAGE which provides costumes to pediatric cancer patients in hospitals in the United States and other countries. Because of Covid this non profit did not truly get its start until October of 2020, but has already provided 250 patients in 41 states and 6 countries with costumes that help to make their cancer treatments easier to endure. 
Melissa Scott is the Managing Director of the Charlotte North Carolina branch of the Pediatric Cancer non profit COOL KIDS CAMPAIGN. Melissa will talk about the many different programs it offers to these kids and their families, and will also discuss the contributions from former great athletes and current Board Members Ken Singleton and Dan Jansen, as well as the contribution from all time Olympic star Mike Eruzione.
Just 1 day after her son Jacob passed away from Medulloblastoma in 2009, Nancy Goodman started the Non Profit KIDS V CANCER.  Nancy will discuss this non profit, whose objective it is to find new methods and medicines to help in the fight against Pediatric Cancer. Nancy is one of the leading advocates on Capitol Hill for these kids, and her advocacy has produced a number of initiatives along with legislation that has produced successful results and promises to produce even more successful results as time goes on.
After hearing that a fellow high school classmate was diagnosed with Non Hodgkins Lymphoma, High School seniors Cole Stabnick, Luke Reynolds and five others created an event to honor his cancer fight. This event became a non profit called BALL 4 A CURE. This non profit is anchored by a 3 on 3 basketball tournament along with a recently added golf tournament and has raised over $100,000, which has been donated to the Connecticut Children's Medical Center to help in the fight against Pediatric Cancer.  This non profit is only in its infancy as there are plans to expand both the number of events as well as hopefully working directly with pediatric cancer patients to help make their difficult lives easier and happier. Both Cole and Luke are vey passionate about giving back which is always a great thing to see, especially from two young men that are simultaneously trying to advance their own blossoming career paths. 
Emily Hein is a Registered Nurse, and a mother of two children who fortunately have never been diagnosed with Pediatric Cancer. After her friend's 5 year old daughter passed away from Neuroblastoma, Emily, who was a long time volunteer for different causes, decided to concentrate solely on helping kids and their families navigate their way through the most difficult path imaginable as they fight their individual cancer battles.Emily will talk about her advocacy work and her relationships that she has developed with many children and their families who are going through this process. 
Jayne Vinson's grandson Jayden was diagnosed with colon cancer when he was 11 years old, a from of cancer that normally strikes adults in their middle age years or even later. Jayden went through an excruciating 17 hour surgical procedure  which cost him his colon, spleen, gallbladder, and part of his liver and pancreas in the process. Jayden passed away of July 17th of this year. As rare as this cancer is when it comes to children, it unfortunately may not be as rare in the years to come.
Dr. Tabitha Cooney joined the Dana Farber Cancer Institute in 2019 as a Pediatric Neurooncologist as well as the Director of  the Pediatric Neuro Oncology Survivorship Program. Dr. Cooney will talk about those roles as well as discussing the clinical trials that she has been working on and the difficulties that Pediatric Brain Cancer survivors face as they move  through their lives into adulthood. 
Regina Karchner was finally diagnosed with a Pediatric Brain Tumor when she was 16 years old, 2 years after her symptoms were dismissed by her pediatrician, who suggested that Regina's mother , who was insisting on a more thorough examination, go for psychological help.As is always the case, her mother proved to be correct and Regina has since dedicated her life to helping other Pediatric Brain Cancer survivors through her position as the West Region Social Work Coordinator for the Children's Brain Tumor Foundation.
When Derek Zinser's father passed away on January 1st of 2009, Derek decided he needed to become involved in the fight against cancer, and chose Pediatric Cancer as his outlet. Five years after his father's passing in 2014 Derek started Mascots For a Cure, a non profit to help cheer pediatric cancer patients up during their treatments in hospitals around the country. This non profit featured the Chubby Checker Twist Challenge, which became a signature part of helping these kids.Not to be content , Derek has recently completed a book entitled Sir Roland's Big Adventure which he hopes will be a New York Times Bestseller,  and will be released to the Public on January 1st of 2022, exactly 13 years to the day his beloved father passed away. Derek is also planning on becoming a Pediatric Oncology Nurse, as he continues his limitless passion to do what he can to make the lives of pediatric cancer easier and as meaningful as possible. 
Ally Tamayose and Delaney Sweet are two of the thirteen Jr. Board Members of MIB Agents, a non profit started by Ann Graham that focuses entirely on the very difficult bone cancer of Osteosarcoma.  Ally and Delaney will discuss their Pediatric Cancer journeys, their plans for the future, and their thoughts on MIB Agents, which has meant so much to both of them as they are giving back to others who have been diagnosed with this same disease.
Kara Skrubis, Maeve Smart, and Mia Sandino all were diagnosed with Osteosarcoma as adolescents or teenagers. They will discuss their individual journeys with this form of Pediatric Bone Cancer , in which they all have endured very difficult treatment.  They will also talk about their roles and their thoughts on MIB Agents, which is a non profit dedicated exclusively to the fight against Osteosarcoma. These wonderful young women are all Jr. Board Members of this organization, and all want to help other patients who have had to also struggle with this most difficult form of pediatric cancer. 
Grace Bunke was diagnosed with Osteosarcoma in August of 2014, and fought this disease as bravely as possible until her passing in March of 2018. On today's Podcast, her mother Vicki will talk about Grace's Rotation Plasty surgery which allowed her to be fitted for a  a prosthetic leg, which led to her becoming a good enough swimmer that she qualified for the Georgia Para State Swimming Championships. Although Grace was too sick to participate in those championships, Grace was able to participate in Swim Across America in Lake Lanier Georgia, just 5 months before she passed away.  Vicki will also detail the treatment that Grace had to endure because of the 20 tumors that she had in her lungs, as a result of her Osteosarcoma.  Finally, Vicki will talk about her own participation in Swim Across America, in which she will be participating in 14 events this year to honor the memory of her beloved daughter.
Jonathan Agin's hero, his daughter Alexis, passed away from DIPG after a 33 month battle with this most deadly form of Pediatric Brain Cancer.  Since that day  in January of 2011, Jonathan has become one of the foremost and best known advocates for kids who are diagnosed with this almost always terminal disease.Jonathan will talk about the many aspects of advocacy work that he is doing in the hope that some day there will be real progress and real hope for this type of brain cancer, which has seen few real advances in treatment over the past too many years. Jonathan is now the Director of the PREP for Gold Childhood Cancer Organization which stands for Preparation , Research, Education, and Programs and this organization will make a real impact for these kids and their families in the coming years. 
Olivia LoRusso was diagnosed with Acute Myeloid Leukemia when she was 11 years old. Her mother Shelley will talk about her very difficult battle with this disease which led to her passing in April of 2017.  Since that time Shelley started the Olivia Hope Foundation which is focused on both research and in helping families that are going through the very unfortunate experience that Shelley, her husband Rob, and her daughters Gia and Sabrina, (Olivia's twin) had to endure while watching  this disease take hold of their beloved Olivia. 
Anna Thompson's son Lake passed away from Acute Myeloid Leukemia on May 1st of 2015 when he was nine years old. Anna will talk about Lake's battle with this disease, plus the non profit that she and two other families started after they lost their daughters to the same disease a few months later . This non profit has raised almost a million dollars  in research  for AML.  Anna will also talk about her decision 2 years ago, to donate her liver to a 22 year old engineering student who was in dire need of a liver transplant. 
Bryanna Kitchen had to deal with High Functioning Autism, ADD, and learning disabililites, even before her leukemia diagnosis in early August  of 2016. Her mother Kristena will talk about Bryanna's life and her 85 day hospitalization which sadly ended as she passed away on October 24th , having never left the hospital. Bryanna was nine years old.Kristena will also discuss her Bryanna's Love Non Profit, in which Kristena is trying to help other pediatric cancer patients and their families have an easier path then did Bryanna. 
When Ann Graham was training for a marathon at the age of 43, she developed pain in her leg which eventually was diagnosed as Osteosarcoma, a bone cancer which is normally found in adolescents and teenagers. Ann will tell the story of her recovery at Memorial Sloan Kettering in New York City, where she met the mother of Alyssa Divers, a young Osteosarcoma patient who was nearing the end of her life. Ann arranged to have Alyssa spend 3 days in NYC where she went to see a performance of the Rockettes, a performance of the Nutcracker, and spent time visiting the American Girl store.Alyssa passed away just two weeks later and Ann has dedicated her life to helping as many Osteosarcoma patients as she can with her MIB Agents Non Profit which was officially started in 2016. 
Dr. Lori Wiener is the head of the Psychosocial Support and Research program at the Pediatric Oncology branch of the National Cancer Institute which is associated with the National Institutes of Health. Dr. Wiener helped to develop the first evidence based psychosocial standards of care for children with cancer and their families. She also has introduced innovations such as Shop Talk and My Voices, plus has authored a book entitled The Gift of Gerbert's Feathers, as she has taken on the role of helping these kids understand their own cancer battles.Dr. Wiener was also the co- founder of the Children's Inn, which is located near the National Institutes of Health, and has proven to be a go to place for these kids and families to go for care, comfort, and support. 
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