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…
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…
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…
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 –…
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…
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…
