The Nicholas Conor Institute

What would happen if, somewhere in the world, an airplane full of children crashed every single day? We have 274 children die in our world every single day from #ChildhoodCancer, yet it is rarely mentioned in the media...

Worldwide Bereaved Siblings Month is an annual designation observed in November. Our #ChildhoodCancer community certainly has seen the effects, many firsthand, of losing a sibling. Please reach out to someone you know who has lost a brother or sister. Losing a sibling causes pain that nobody can even begin to imagine unless it’s something they have gone through themselves.

Thank you to Congressman GK Butterfield, NC 1 and Congresswoman Elaine Luria, VA-2 for cosponsoring the Gabriella Miller Kids First Research Act 2.0 HR 6556.

Only 4 drugs specifically for childhood cancers! 3 for leukemia, 1 for neuroblastoma. This is why we need to keep the Creating Hope Act. When the Senate returns to Washington, this must be a TOP Priority! If the Senate does not pass it by December 11, it will be lost. Urgent! PLEASE CALL TODAY These Top Senators to pass Creating Hope Reauthorization Act S. 4010 Senator Mitch McConnell 202-224-2541 Senator Chuck Schumer 202-224-6542... Senator Lamar Alexander 202-224-4944 Senator Patty Murray 202-224-2621 Senator Sanders 202-224-5141 Senator Warren 202-224-4543 If we don't get this passed now, new drug development for kids will be negatively affected for the next 10 years. In the last 8 years, this act has produced two cancer drugs plus 24 for rare diseases and for once, there are many more #ChildhoodCancer drugs in the pipeline because of the incentives in this ACT! It's urgent you ACT and call. They will not answer the phone today, but DO leave a message for each Senator above. They are key to this bill passing. Show them how important this is! https://wp.me/P2TETU-1J

Limited clinical trials are being conducted with DIPG patients using CAR T-cell therapies. If CAR T-cell therapies are proven to be safe and effective in patients with DIPG/DMG, they could present a new treatment option for a tumor which has historically proven resistant to all conventional therapies. https://www.forbes.com//trials-underway-using-experiment/

This is why we need to keep the Creating Hope Act. If the Senate does not pass it by December 11, it will be lost. We only have 4 drugs specifically for kids' cancers. That's why we use 50 to 60 year-old adult chemo. Yes, it kills cancer, but it also causes serious side effects in 95% of childhood survivors. If we don't get this passed now, new drug development for kids will be negatively affected for the next 10 years. In the last 8 years, this act has produced two cancer dr...ugs plus 24 for rare diseases and for once, there are many more #ChildhoodCancer drugs in the pipeline because of the incentives in this ACT! It's urgent you ACT and call. They will not answer the phone today, but DO leave a message for each Senator above. They are key to this bill passing. Show them how important this is! https://wp.me/P2TETU-1JS Urgent! PLEASE CALL TODAY These Top Senators to pass Creating Hope Reauthorization Act S. 4010 Senator Mitch McConnell 202-224-2541 Senator Chuck Schumer 202-224-6542 Senator Lamar Alexander 202-224-4944 Senator Patty Murray 202-224-2621 Senator Sanders 202-224-5141 Senator Warren 202-224-4543

Clinical Trial News Now Open: Testing Atezolizumab in Patients >= 2 Years Old With Newly Diagnosed, Unresectable, or Metastatic Clear Cell Sarcoma or Chondrosarcoma A new clinical trial, "Testing Atezolizumab in Patients >=2 Years Old With Newly Diagnosed, Unresectable, or Metastatic Clear Cell Sarcoma or Chondrosarcoma," is a Phase II trial testing how well atezolizumab works in treating patients 2 years or older with clear cell sarcoma or chondrosarcoma that is newly diagno...Continue reading

Everyday in America, 46 parents hear the news and begin, literally, the journey of a lifetime...

We all know what kids want and what kids need, are not the same. Think about this: While hundreds of cancer drugs have been developed and approved for adults, today we have only four drugs available that were approved in the first instance for use in cancer treatment for children: clofarabine (2004 for ALL), dinutuximab (2015 for NB), tisagenlecleucel (2017 for ALL) and calaspargase pegol-mk (2018 for ALL). We must get the Creating Hope Act completed by the Senate by this December 11th or lose it completely. Losing it will set kids' cancer drug development back by decades. We have an extra hour today. Make a couple of phone calls, no one will answer it, but leave a message anyway, help kids' cancer drug development. It only takes minutes! https://wp.me/P2TETU-1JS

Kids are tough and they always make the best of bad situations! Thanks for sharing Motorsports Go Gold!

Nothing is more scarier to parents than #childhoodcancer. Just ask any mother or father that has faced it...