This page is still under construction and should be completed by 10/17/2016
2/11 CCTR Presents: Emma Wren, and Sharon Kane of “Funding Neuro”
Emma Wren of Alford UK, explains the realities of a DIPG diagnosis for her daughter Keira, and the experimental program with which Keira is involved to combat the deadly disease. Sharon Kane of “Funding Neuro”, joins us to discuss the technical details of the procedure and the origins of this research, and Funding Neuro. The fate of Keira’s future peers with brain cancer rests upon her pioneering journey.
Emma Wren of Alford, Lincolnshire, UK
“Life before diagnosis was very hectic but fun, a house and life full of laughter, I was a working mum looking after adults with dementia which I left to become a full time career to Keira after she was diagnosed. Keira has always had the capacity to light up a room just by being in it, she makes and always has made everyone laugh and smile just by being who she is. Her best friend Lexi is almost a year younger than Keira, and Keira has always looked after her at school but since diagnosis the role reversed and Lexi looks after Keira (they have a very strong bond, have been best friends from nursery, they are in same class and their teachers say they have never known friends like them as they always sense where the other one is), she always looked after her classmates if they were ill, upset, needed help but that’s reversed – everyone looks after her now. She’s very popular in school.”
Keira was diagnosed in August 2014 while on holiday in the south of UK, she was playing in the sea with me and her legs gave way, she almost drowned, I had to resuscitate her, a CT scan in Southampton hospital showed a lesion on the brain, an MRI afterwards showed DIPG. She was 5 years old; she turned 6 a month later. Prior to that she was a happy healthy little girl who loved school, loved her friends and family, enjoyed ballet and rainbows, a little mother hen to everyone. Her teacher said to us several times that if she could bottle Keira up and sell it she would be a very rich lady cause her mannerisms, her caring side, her helpfulness isn’t something that can be taught, it comes from the heart.”
Funding Neuro, described by Sharon Kane, CEO
Wobbly Williams was established when Bryn Williams (IP lawyer in Glasgow) was diagnosed with early onset Parkinson’s at aged 36. Bryn wanted to raise money to find a cure for Parkinson’s, but to incorporate humour and hope into awareness raising and fundraising, to make something positive come from such a devastating condition. As the charity progressed and funded research into a delivery system that was key to the GDNF trial for Parkinson’s it became apparent that the system could also have a significant, positive impact for other neurological conditions, including Brain Tumours, Alzheimer’s, MND and MS etc.
As a result of the change from exclusively supporting research for Parkinson’s to other Neurological conditions the name ‘Funding Neuro’ was born.
Having been instrumental in supporting Professor Steven Gill to initiate the GDNF trial for Parkinson’s, our focus now is to raise funds and support for the delivery of chemotherapy to children with DIPG (Diffuse intrinsic pontine glioma). Please visit www.fundingneuro.com for more information.
2/4 Show: CCTR interviews Jonathan Agin, Development Liaison and General Counsel for the Children’s Cancer Therapy Development Institute, or CC-TDI, a non-profit biotech company dedicated to eradicating childhood cancer in all forms. Jonathan is an attorney by trade and has become one of the United States’ foremost advocates for children with cancer following the death of his daughter Alexis in January of 2011. Director Charles Keller MD also joins us to describe the very innovative and proactive design of this company, addressing the “pre-clinical gap” in our medical research system that has resulted in the neglect of the deadliest childhood cancers, many of which have been awaiting effective therapy development for decades. Watch on Youtube from this link.
2/4/2016 Jonathan Agin JD., parent, advocate, and co-founder of CCTDI
Jonathan Eric Agin, JD, is the General Counsel, Institutional Official and Development Liaison for the Children’s Cancer Therapy Development Institute (www.cc-tdi.org), a non-profit childhood cancer research biotech located in Portland, Oregon, and he is the Executive Director of the Max Cure Foundation (www.maxcurefoundation.org). In addition, he is the Cancer Knowledge Network (Canadian Oncology Journal) Childhood Cancer Awareness and Advocacy Section Editor and frequent contributor to the Huffington Post. He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013). He is an original founding steering council member of the DIPG Collaborative. Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG (an inoperable brain tumor) in April 2008. Alexis battled heroically for thirty-three months until January 14, 2011. Jonathan is an attorney by training and a former civil defense trial lawyer from Washington, DC. Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies. Jonathan resides in Falls Church, Virginia and has four children, Alexis (1-31-06 to 1-14-11), Gabriel age 6, Trevor age 3 and Kylie, 22 months. Jonathan maintains his own website for his advocacy activities: www.jonathanagin.com and can be followed on Twitter @jonathanagin. In his spare time he also competes in endurance events like running marathons and triathlons.
Dr. Charles Keller, Scientific Director of the Children’s Cancer Therapy Development Institute(CCTDI)
Charles’s research focuses on the development of more effective, less toxic therapies for childhood cancers. His special interest is advanced disease that has spread beyond the initial location of the cancer. Charles co-chairs the brain tumor developmental therapeutics committee (CNS-DVL) of the Children’s Oncology Group and is a member of the soft tissue sarcoma (STS) committee of Children’s Oncology Group, and recently completed a 5-year rotation as a Standing Member of the National Cancer Institute NCI-I Study Section. Charles attended Tulane University where he received a degree in Biomedical Engineering prior to attending Baylor College of Medicine where he received his M.D. degree. After completing his internship and residency in Pediatrics at Texas Children’s Hospital, Charles trained in Pediatric Hematology-Oncology at the University of Utah and with 2007 Nobel laureate, Mario Capecchi. Charles has authored over 80 scientific publications and is a recognized expert in the biology of childhood sarcomas and the preclinical investigation of childhood cancers. Charles is also a co-founder of First Ascent Biomedical, a company* developing personalized medical approaches to therapy for canine and human solid tumor patients. In their spare time, Charles, his wife Kelly & their daughters enjoy outdoor adventures, as well as designing and building treehouses.
1/28/2016 Lisa Solis DeLong, Author of “Blood Brothers”–a memoir of loss and faith while raising two sons with cancer
Lisa is a registered nurse, author, bereavement facilitator, nationally known speaker and advocate for the needs of patients and their families. Lisa’s first-born son died at the age of 15 when he relapsed after a ten-year remission from leukemia. Six years later, her youngest son, was also diagnosed with the same kind of non-familial leukemia. He has completed treatments and is now a healthy teenager! Lisa also has two courageous daughters who were bookended by their brothers. As a nurse, Lisa has truly experienced life on both sides of the curtain—that of patient and caregiver.
Lisa brings a strong knowledge base of healthcare from both the frontline and personal patient perspective. She has written and now speaks with great candor about the events of more than two decades of trying to keep her sons alive and living with loss. She has appeared at numerous nurse conferences, hospitals, medical conferences, and meetings of various professional health organizations. Lisa has the unique ability to articulate about the most delicate subject—loss of a child. Her “energizer bunny” personality shines through as she always leaves her audiences feeling very good about their valuable roles in the healthcare family.
Lisa’s 30 years of nursing experience has truly been a womb to tomb experience. She began as a nurse’s aid in her teens, a postpartum and newborn nursery nurse while raising her family, and learned pediatric oncology while caring for her sons. She has been an advocate for palliative and hospice care at the state level.
Lisa intimately understands the sacred nature of healthcare, its trials and tribulations and the transformational joy, which accompanies purpose driven, worthwhile work.
Lisa’s book: “Not many people experience the death of a child; fewer yet face the possibility of having to do it twice. Justin DeLong was a bright, energetic child when he was diagnosed with leukemia at age five. After battling the cancer, he went into remission for ten years, where he laughed and ran long-distance races and slowly entered adolescence. Sadly, in July 2000 he succumbed to the disease twelve days after his fifteenth birthday. Lisa DeLong and her family were left to pick up the pieces and try to find joy in life without their beloved eldest son and brother. Then, six years later, they discovered something terrifying—their youngest son, Jacob, had leukemia too. Blood Brothers is Lisa DeLong’s story of what it has been like to have two sons with leukemia, a lifetime apart. As she struggles to understand how a loving God could allow this to happen, she searches for a way to keep her marriage, her family, and her own sanity together. Whether you’re a mother, someone who has experienced cancer either in yourself or someone you love, or a medical professional, the story of these two Blood Brothers will speak to your heart and allow you to see how with faith, great triumph can come from unimaginable tragedy.” On Amazon.com
1/21/2016 Ellyn Miller of Smashing Walnuts Foundation
Listen to the Jan. 21 show here.
Ellyn Miller is the Executive Director of the Smashing Walnuts Foundation. Her daughter, Gabriella, the inspiration for the creation of the Foundation, lost her year long battle with DIPG, an incurable brain cancer, on October 26th, 2013. Since then, Miller has worked tirelessly to promote the foundation’s mission to fund childhood cancer research.
Due to her grace and determination under dire circumstances, Miller is regularly asked to speak about the need for childhood brain cancer funding. She successfully lobbied Congress to pass the Gabriella Miller Kids First Research Act to increase childhood disease funding at the National Institutes of Health by $126,000,000. The act was signed into law by President Barack Obama on April 3, 2014 with Miller by his side.
Like her daughter before her, Miller has won numerous awards and citations for her ongoing advocacy on behalf of children suffering from terminal brain cancer. She continues to lobby Congress and the National Institutes of Health for more funding for childhood brain cancer research.
Born and raised in Chicago, IL, Ellyn Miller holds a Bachelor of Science degree in psychology and sociology from the University of Illinois at Chicago. She currently resides outside of Washington D.C. in Leesburg, VA with her husband, Mark and son, Jake.
Katie was diagnosed with DIPG in 2015, and continues fighting a battle that threatens to be terminal. Her parents share their commitment to raising awareness for DIPG, that our medical system work more urgently to find a cure for the other children fighting, and the many more to come. To support Katie’s panobinostat, with which her tumor is remaining stable, visit www.KatherinetheBrave.org. This drug should be available to those who need it.
About McKenna Claire Foundation (pediatric brain tumor awareness, support, and research):
We envision a world shining with possibility and free of pediatric brain cancer; where families can remain whole and little dreams can become big realities. We believe that through our efforts, through the good in individuals in our local and global community, and through the brilliance, collaboration, and hard work of focused scientists—we can make a difference in the world and we can change the lives of other families who are hurt by this terrible disease.
If you are interested in being a guest on our show, please contact firstname.lastname@example.org.