NORD Advocates for Rare Diseases

Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD’s advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of its…

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Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry’s middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry’s advocacy for…

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NEW Information Regarding the Funding Opportunity Announcement (FOA) PAR-16-348

February 1, 2018,  The NIH Gabriella Miller Kids First Pediatric Research Program Team Dear Colleagues- The Kids First Program would like to inform you that the Funding Opportunity Announcement (FOA) PAR-16-348, “Small Research Grants for Analyses of Data for the Gabriella Miller Kids First Data Resource (R03)” recently expired, and the…

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Sunshine Coast Daily: The Last Hope for Dying Children

by Jane Hansen, January 21, 2018, an Australian Outlet https://www.sunshinecoastdaily.com.au/news/last-hope-dying-children/3315273/ IT’S the last chance hospital for dying children – a Mexican treatment centre that ­refuses to publish results or co-operate with the medical community. But, when your daughter has a fatal strain of brain cancer, you will do anything –…

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Congressman Knight Champions Awareness Legislation for Children with Cancer

January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee.  The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain…

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Paul 4 the People: A Personal Journey of Advocacy through Involvement

A long-time advocate for children with cancer, Paul Miller of Littleton, CO shares with us his story of advocacy through fundraising events, routinely donating blood, supporting groups, connecting people, and how these activities have finally evolved into a bid for his State Legislature. Catalytic to this quantum leap was interacting…

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Congressman Knight Champions Awareness Legislation for Forgotten Children

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG:  diffuse intrinsic pontine glioma.  Not only does the bill call for an Awareness Day for these children and their families, May 17, it…

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FACTOR 2018: MIB Agents Osteosarcoma Mission Full Speed Ahead

Ann Graham, CEO of MIB Agents–Make-It-Better-Agents–and osteosarcoma survivor, joins us to discuss the great strides in improving outcomes for osteosarcoma patients which her organization accomplishes as they move forward. The FACTOR Conference began last year in 2017 and was enormously successful in bringing top oncologists, clinicians, patient families and advocates…

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Shane and Shawnee Doherty: The Story behind “Hope through Hollis”

Shane and Shawnee Doherty discuss frankly their experience with their son Hollis who was diagnosed with DIPG in March of 2016. DIPG, diffuse intrinsic pontine glioma, is for all practical considerations a death sentence. The Doherty family showed an extraordinary solidarity out of the gate to endure the experience in…

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Steven and Angie Giallourakis and the Steven G. AYA Cancer Research Fund

Two-time cancer survivor Steven Giallourakis joins us with his mother Angie to share their experience which inspired the Steven G. AYA Cancer Research Fund in Avon Lake, Ohio. Angie Giallourakis is President of the organization which has programs in wellness, education, research and advocacy for young people with cancer. “AYA”…

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