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In Memory of Andrew Lee

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Andrew Lee Composite
Caption: Clockwise from left, Andrew Lee with his Nissan GT-R; Andrew Lee and me; Isaac Barchus with his parents, Steve and Kathe Barchus, and Andrew’s father Bruce Lee. Credits: Driven to Cure, Foundation for the NIH, The Children’s Inn at NIH

A lot of young people are driven—driven to get a good education, land a great job, find true love, or see the world. But, today, I want to honor the life of a young man who was driven by something even bigger. Andrew Lee was driven to cure kidney cancer—not only for himself, but for others as well.

I knew and loved Andrew. And so did the legion of doctors, nurses, researchers, and other team members who had the privilege of fighting cancer with him over four very challenging years. Andrew was 19, just finishing his freshman year of college, when he received a devastating diagnosis: stage 4 kidney cancer, a rare type called Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC). There is no known cure for HLRCC, and doctors estimated his survival at about a year at best.

Still, Andrew and his family weren’t about to go hide somewhere and wait for the end. They began a journey that led him to take part in at least seven clinical trials, including ones at Yale University, New Haven, CT; Georgetown University, Washington, DC; and the NIH Clinical Center, Bethesda, MD. Experimental treatments slowed down the cancer, but sometimes made him terribly sick. Yet, Andrew always remained optimistic and cheerful. If a trial didn’t help him, maybe it would help someone else.

Andrew’s generosity didn’t stop there. Inspired by his father’s gift of a totally awesome 2015 Liberty Walk Nissan GT-R, he founded the Driven To Cure (DTC) nonprofit and traveled the country in his orange sports car to raise funds for kidney cancer research. According to the National Cancer Institute, nearly 63,000 Americans are diagnosed with kidney and renal pelvis cancers each year.

Andrew figured out how to put the “fun” in fundraising, drawing crowds at car shows and raising more than $500,000 in donations in just three years. His efforts were recognized by the Foundation for the NIH’s Charlie Sanders Award, which I had the privilege of presenting to him last fall.

But I think it was Andrew’s humanity that touched us the most. He always had time to share his story, to encourage another child or adult struggling with a frightening diagnosis. He’d give thrills to kids at The Children’s Inn at NIH when he rumbled into the parking lot with his 700 horsepower GT-R. At car shows, throngs of people were drawn in by the turbocharged ride and then captivated by the young man with the bright smile and compelling story. Andrew wrote: “I realized that the vehicle of my dreams was also the vehicle which gave me the opportunity to make a difference; to do something bigger than myself.”

Still, on the personal level, kidney cancer proved relentless. Options for treatment eventually ran out. As the disease progressed, Andrew and his family had to make another difficult transition—choosing to celebrate life, even in the face of its approaching end. He needed a wheelchair, so family and friends came up with one, keeping in mind one of Andrew’s last wishes. When Andrew needed 24-hour care and pain control, he was admitted to the NIH Clinical Center Hospice Unit, where comfort could be provided and his loved ones could gather around. That even included getting government permission for a visit from his dog Milo! Surrounded by friends and family, he died peacefully on April 21.

Andrew made friends with everyone—especially kids at The Children’s Inn. One special buddy was Isaac Barchus, who has a rare autoinflammatory disease called CANDLE Syndrome. When he was back home in Omaha, NE, Isaac enjoyed challenging Andrew to long-distance video games, especially FIFA Soccer.

Although Isaac can walk, it can be very painful, so he sometimes turned to an old, beat-up wheelchair to cover long distances. But not anymore. When Isaac turned 15 on June 7, Andrew’s father Bruce Lee fulfilled his son’s wish for the future of his wheelchair. He presented Isaac with Andrew’s wheelchair, which had now been painted the same orange color as Andrew’s GT-R and emblazoned with the feisty slogan on Andrew’s personalized license plate—F CANCR. What a cool birthday gift!

During his final weeks and days, Andrew and his dad often listened to the Andy Grammer song, “Don’t Give Up on Me.” Andrew’s family never gave up on him, and he never gave up on them either. In fact, Andrew never gave up caring, loving, and believing. He wouldn’t want us to either, as his favorite song reminds us: “I will fight, I will fight for you; I always do until my heart is black and blue.”

Yes, Andrew, our hearts are black and blue from losing you. But we won’t give up on all you stood for in your short but inspiring life. Race In Peace, dear Andrew.

Links:

Remembering Andrew Lee (Foundation for the National Institutes of Health)

NIH Cancer Patient Receives Humanitarian Award (The NIH Record)

The Children’s Inn at NIH

Driven To Cure (Silver Spring, MD)

Video: Fighting Cancer With a 700-hp Nissan GT-R (The Drive)

Video: Andy Grammer—”Don’t Give Up On Me” [Official Lyric Video] from the film Five Feet Apart

Hereditary Leiomyomatosis and Renal Cell Cancer (National Library of Medicine/NIH)

Kidney (Renal Cell) Cancer (National Cancer Institute/NIH)

CANDLE Syndrome (Genetic and Rare Diseases Information Center/NIH)

Treating CANDLE Syndrome (National Institute of Allergy and Infectious Diseases/NIH)


Standing With a Remarkable Young Man

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Francis Collins and Andrew Lee

It was a pleasure to participate in presenting Andrew Lee with the Charles A. Sanders, M.D., Partnership Award at the annual fall board dinner of the Foundation for the National Institutes of Health (FNIH). The dinner was held on October 24 in Bethesda, MD. The 22-year-old Lee uses his passion for cars to travel the country to raise awareness and funds for rare kidney cancer research in children and young adults. In just over two years, Lee has turned his Driven to Cure, Inc. into an active grassroots movement that has made generous donations to help advance cutting-edge kidney cancer research conducted by the National Cancer Institute at the NIH Clinical Center. The Charles A. Sanders, M.D., Partnership Award is named for the former chairman of the FNIH Board of Directors. Credit: FNIH


All of Us: Eric Dishman’s Story

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At age 19, Eric Dishman was diagnosed with a rare form of kidney cancer. The prognosis: nine months to live. Thanks to early access to pioneering research in precision medicine, which clarified the best treatment plan for him, Eric is alive and well almost 25 years later. As you’ll learn in this video, Eric now directs NIH’s All of Us Research Program, which is enrolling 1 million or more Americans to build the foundation for the future of precision medicine.

If you’d like to volunteer for this landmark effort, go to the All of Us website, click the “Join Now” button, and follow the three easy steps. First, create an account. It’s free and takes just a minute or two. Next, complete the enrollment and consent forms. That usually takes 30 minutes or less. Then, complete some baseline surveys and find out what to do next. Thank you!


Different Cancers Can Share Genetic Signatures

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Cancer types floating over a cell with unraveling DNA

NIH-funded researchers analyzed the DNA of these cancers.

Cancer is a disease of the genome. It arises when genes involved in promoting or suppressing cell growth sustain mutations that disturb the normal stop and go signals.  There are more than 100 different types of cancer, most of which derive their names and current treatment based on their tissue of origin—breast, colon, or brain, for example. But because of advances in DNA sequencing and analysis, that soon may be about to change.

Using data generated through The Cancer Genome Atlas, NIH-funded researchers recently compared the genomic fingerprints of tumor samples from nearly 3,300 patients with 12 types of cancer: acute myeloid leukemia, bladder, brain (glioblastoma multiforme), breast, colon, endometrial, head and neck, kidney, lung (adenocarcinoma and squamous cell carcinoma), ovarian, and rectal. Confirming but greatly extending what smaller studies have shown, the researchers discovered that even when cancers originate from vastly different tissues, they can show similar features at the DNA level


New Understanding of a Common Kidney Cancer

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Purple stained kidney tissue

Caption: Histologic image of clear cell kidney cancer
Slide courtesy of W. Marston Linehan, National Cancer Institute, NIH

Understanding how cancer cells shift into high gear—what makes them become more aggressive and unresponsive to treatment—is a key concern of cancer researchers. A new study reveals how this escalation occurs in the most common form of kidney cancer: clear cell renal cell carcinoma (ccRCC). The study shows that ccRCC tumors acquire specific mutations that encourage uncontrollable growth and shifts in energy use and production [1].

Conducted by researchers in the NIH-led The Cancer Genome Atlas (TCGA) Research Network, the study compared more than 400 ccRCC tumors from individual patients with healthy tissue samples from the same patients. Researchers were looking for differences in the gene activity and proteins in healthy vs. tumor tissue.