Emily’s Fight
It’s been more than a year since finding out that Eric had cancer.
To say that last year was tough would be an understatement. Eric suffered more than any human being should have to suffer in their lifetime and we’re all left with scars from the ordeal. I still live every day in fear that something terrible could happen and I know Eric does too. From the time we got married to recently, Eric and I always talked about having at least two children. Now we don’t know if it’s in the cards. There’s a lot we don’t know. The cancer may be gone from Eric’s body but it hasn’t left our minds.
But most of all we are extremely lucky. Eric is still alive.
It’s more than just “dumb luck” though. Eric didn’t survive by chance. In 1997, the FDA approved Rituximab for use in treating Diffuse Large B-Cell Lymphoma (DLBCL), the kind of cancer Eric had. This drug, combined with the chemotherapy that DLBCL patients were already being given, changed the game for Lymphoma outcomes. Before Rituximab? Most people with DLBCL died. After Rituximab? More people Eric’s age actually live than die.
There is still much progress to be made when it comes to Lymphoma, but the fact remains that had Eric been diagnosed when he was 17 instead of 37, he was more likely to die than to live. 20 years later, I still have a husband and Bryn still has a father.
This all brings me to my old friend Emily (old in the sense that I’ve known her since middle school, not old in the sense of age. She’s my age: 32). Emily has Cystic Fibrosis. Cystic Fibrosis (CF) is a genetic disease that causes a thick, sticky mucus to build up in the lungs. There is no cure for Emily’s Cystic Fibrosis; it is progressive and fatal which means she will eventually die from the disease. Emily is nearing the end stage of her disease. Every day she gets weaker and sicker. The life expectancy for Cystic Fibrosis is 41 years old.
What makes matters more dire for Emily is she has a rare mutation of Cystic Fibrosis called a “nonsense mutation”. While there have been game-changing breakthroughs in treatments for many with CF in the past few years, none of these advances — nor those in the drug development pipeline — help Emily or others with nonsense mutations like her.
No one has been looking for Emily’s cure. That is, until recently.
In 2011, Emily realized she didn’t have much time left and took matters into her own hands. She created Emily’s Entourage, a non-profit organization fast-tracking research into a cure for rare, nonsense mutations of Cystic Fibrosis. Money raised by Emily’s Entourage funds an innovative research program with a team of scientists who are developing drugs to treat nonsense mutations of CF, including some who are using Emily’s own cells as a platform for drug discovery. Beyond saving Emily’s life, the other cool thing about this research is it has far-reaching implications. Nonsense mutations are rare within the CF population but account for approximately 12% of all genetic diseases, affecting roughly 30 million people worldwide. This includes certain types of muscular dystrophy, inherited blood disorders, and cancer.
When Eric was diagnosed with cancer 1 year ago, Emily was one of the first people who reached out to me and offered to help. Emily, who requires hours of breathing treatments and countless pills to make it through each day, wanted to find out how I was doing and make connections to ensure Eric got the best possible treatment. Someone with so little time and energy to give was one of the most generous. That’s the kind of person Emily is and the world can’t afford to lose her.
Eric and I had our lives derailed by cancer 1 year ago but we got our lives back thanks to science. No one can predict the future, but as far as we know right now, we are on track to have a long healthy life with Bryn. Emily, on the other hand, got her diagnosis 32 years ago. She is still fighting to get her life back. Let’s help her fight.
You can donate to Emily’s Entourage here: https://www.emilysentourage.org/donate/ and let us know in the comments that you did! I’ll personally donate $2 for every comment on this post by June 13. In addition, for every person who presses the heart button on this post by that date, I’m personally donating $1 to Emily’s Entourage.
If I learned anything this past year it’s that you can’t fight alone. Let’s all join Emily’s Entourage and fight for a cure for Cystic Fibrosis.
