Why We’re Here

Rachel's Registry was inspired by a beautiful young woman whose life was cut short when she was only 22 years old. Out of the blue, Rachel was diagnosed with a rare form of cancer already at an advanced stage. Despite her grace, courage and willingness to fight - not to mention the aggressive treatment she received at one of the nation's leading cancer centers - she passed away in 2011.

 

After Rachel’s diagnosis, her parents searched valiantly for every possible treatment option. Ultimately, they did discover a clinical trial that was enrolling patients to receive an experimental treatment for her specific type of cancer. But it was too late to help Rachel, who was in the final stage of her disease by that time.

 

The heartbreaking part is that, when Rachel’s parents learned about it, this clinical trial already had been actively enrolling patients for seven months.

 

Would participating in that clinical trial have saved Rachel’s life, or given her more time? It’s impossible to say. But the fact that even her physicians were unaware of it is extremely  frustrating. Nationwide, hospitals, cancer centers and other institutions either conduct or have information on cancer clinical trials, but they don’t always talk to each other. That means it’s up to the patient and family to try to track down

the scattered information on clinical trials that, in many

cases, might prolong a cancer patient’s life—or even save it.

 

But it shouldn’t be that way. Cancer patients need to focus

on their treatment and getting well. Often, they are too ill to

spend hours searching the Internet for clinical trials, with

very little to go on and unable to determine whether the

information they find is reliable. And their family members

should not have to literally make it their second job to track

down this information for them.

 

That’s why Rachel’s Registry exists. A specific cancer clinical trial may or may not help a specific cancer patient, but one thing is for sure: If you don’t know about it, it can’t help you.

 

In short, knowledge is power. Rachel touched many lives in

her 22 years, and now Rachel’s Registry picks up where

she left off.