Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.
Legislative Updates and Actions Needed
State of the Union
It was exciting to hear the importance of childhood cancer research highlighted again this year during the President’s State of the Union address on February 4th. Following a year that brought a historic $80 million increase for childhood cancer research, this news demonstrated a recognition at the highest levels that the fight against childhood cancers must remain a national health priority.
In attendance as a special guest of Senator Jack Reed (D-RI), a childhood cancer champion on Capitol Hill, was Rebekah Ham, mother of 2014 St. Baldrick’s Ambassador Grace, a 46 Momma, long-time shavee and St. Baldrick’s Knight Commander. Rebekah and Grace have been tireless advocates for increased research funding that leads to better treatment options and cures.
We were pleased that the President reaffirmed his commitment to childhood cancer research in his Fiscal Year (FY) 2021 budget proposal; however much work is still ahead to ensure that the Childhood Cancer STAR Act and Childhood Cancer Data Initiative receive full funding again this year. Building on the bipartisan progress made through implementing the Childhood Cancer STAR Act and supporting the Childhood Cancer Data Initiative, St. Baldrick’s is eager to work with the Administration, Congress, and the childhood cancer community to ensure the National Institutes of Health continues to receive sustained, robust investments to support research for childhood cancer and all cancers.
Ask your lawmakers to support full funding for the Childhood Cancer STAR Act for Fiscal Year 2021.
Meetings and Events
DIPG Congressional Briefing: February 13
On February 13th, St. Baldrick’s attended a Congressional briefing highlighting Diffuse Intrinsic Pontine Glioma (DIPG), pediatric brain cancers, and H.Res. 114, which aims to establish a DIPG Awareness Day. The standing-room-only crowd included members of the childhood cancer community, Congressional staff, and staff from the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
Rare Disease Week on Capitol Hill: February 25-28St. Baldrick’s Director of Government Relations and Advocacy, Sarah Milberg, on Capitol Hill for the Rare Disease Congressional Caucus Briefing.
On February 25th, St. Baldrick’s attended the Rare Disease Congressional Caucus briefing, which convened policy experts and rare disease stakeholders to provide an update on important legislative issues in the rare disease community.
St. Baldrick’s also attended Rare Disease Day at NIH on February 28th. The purpose of the event was to raise awareness about rare diseases, the people they affect, and NIH research collaborations aimed at addressing scientific challenges and advancing new treatments. Discussion focused primarily on shortening the diagnostic odyssey, individualized therapeutic approaches and personalized medicine, expanding and improving access to rare diseases knowledge, and NIH clinical trial resources.
Invite your Members of Congress to #DFYchildhoodCancers by inviting them to attend an upcoming St. Baldrick’s event!
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