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Jun. 9, 2015

TOPIC: Uncategorized

Rare Disease is a Common Cause

Posted by Sally Davis

Beau Biden, former Attorney General of the State of Delaware and son of Vice President Joe Biden, passed away on Saturday, May 30, due to brain cancer.

Since it was announced that Saturday night, I’ve been asked many times about the National Brain Tumor Society’s reaction is to this tragic news. Sadness, deep empathy and condolences for the Biden family, and frustration over this terrible disease taking another person way too soon are the initial feelings that prevail at a moment like this.

The news of Beau Biden’s passing broke during the middle of the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting. This conference is one of the most important meetings for cancer research every year. As ASCO is a highly technical gathering, we often end up immersed in a cascade of charts, graphs, tables, and statistics as we follow with great attentiveness the presentations on potential new brain tumor treatments. Yet, Attorney General Biden’s passing was a sharp reminder during this time of the realities of this disease beyond plots on a graph. It’s people we are fighting for after all, not statistics.

We know from every account of Attorney General Biden that he was an extraordinary man. Beau Biden was a selfless public servant who dedicated his life to the greater good and citizens of this country, serving not only as a prosecutor, and later Attorney General for Delaware, but also in the National Guard. More importantly, his family and friends knew him as, “quite simply, the finest man any of us have ever known.” Gone at only 46.

Unfortunately, we at the National Brain Tumor Society know all too many like him: great men, women, and children destined to create positive impact in their communities and personal relationships lost too soon. So, while we join the nation in sadness and mourning for the loss of a great man, we also feel motivation and conviction to our mission of better treatments and ultimately a cure. Because though brain cancer is considered a “rare disease,” in times like these, we need to make the push for more and better biomedical research and drug development to be a common cause. Our grief must eventually manifest into action.

There is a lot our nation’s policymakers and all Americans can do to impact progress for patients with rare and serious disease, including brain tumors. And, as a patient advocacy organization, the National Brain Tumor Society promises to continue to do our part to work with all of the stakeholders in the drug discovery and development landscape to improve the way new treatments are uncovered, tested, evaluated, approved, and brought to market.

It is exceptional individuals like Beau Biden, and the nearly 14,000 other Americans who will be lost to a brain tumor this year, who give us the inspiration and motivation to see this promise through. We hope others will unite with us in the fight against brain tumors and other “rare” diseases.


Learn more about National Brain Tumor Society