How A Letter to the President Turned Into a White House Invitation

A few weeks ago, while contemplating the trip I was about to take to Washington D.C. to join my fellow advocates for the Cystic Fibrosis Foundation's tenth annual March on the Hill, I challenged myself to "think big." So I sat down in front of the computer and wrote a letter to the President of the United States.

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Katrina Young
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"Think big." As parents this is what we encourage our kids to do -- in one way or another -- as they grow up and figure out their unique place in this world. Over and over, we remind them to keep shooting for the stars. After all, who knows where their hopes and dreams will take them one day?

A few weeks ago, I decided to follow my own advice. For many reasons, cystic fibrosis was weighing heavily on my mind. While contemplating the trip I was about to take to Washington D.C. to join my fellow advocates for the Cystic Fibrosis Foundation's tenth annual March on the Hill, I challenged myself to "think big." So I sat down in front of the computer and wrote a letter to the President of the United States.

Among other things, I thanked him for his year-old Precision Medicine Initiative and pointed out our shared goal of creating a world without any diseases. Then I ended my letter by mentioning that I would be in Washington D.C. at the end of February to discuss the importance of medical research with elected officials on Capitol Hill. And that's when I decided to really "go big." I told him that I would be honored to meet him and personally thank him and his administration for giving children like my son increased hope for his future.

To be honest, the simple act of pushing myself to think and fight "big" for my son was rewarding enough. But then on the morning of Feb. 12th, I received a call from the White House chief data scientist inviting me and my son to the Precision Medicine Initiative Summit on Feb. 25th. We would be in the same room as key leaders in the fields of science, medicine and technology when President Obama gave his update on this important initiative. This was really BIG!

Over the course of my three-day visit to Washington last week, "think big" became my personal mantra. It is what I told myself as I walked into a room of 200 invited guests and members of the press corps. It is what I thought to myself in disbelief as I met and shook the hand of Francis Collins, director of the National Institutes of Health. And it is definitely what I repeated to myself as I sat only a few feet away from the President as he talked with passion and optimism about unlocking cures for rare diseases.

Katrina-Young-PMI-Summit-Collage

After the Summit, my son and I were invited to attend a round table focus group. The moderator of our group was John Holdren, the director of the White House Office of Science and Technology Policy, and our assigned topic was securing data for the proposed patient research cohort.

For over an hour, I listened to professors, lawyers and other professionals argue about privacy issues. I spent most of the meeting feeling unsure if my voice truly mattered in the scope of this discussion. However, reminding myself to "think big," I raised my hand toward the end of the conversation. With all eyes on me, I held up my cell phone and told them that my son's hospital had already implemented shared data files on a mobile application -- something that I willingly and gratefully registered for. Then to illustrate the advantages of shared data, I told them the story of how I had recently switched my son's care from our local pediatric hospital to the adult clinic. Because of this program, that transfer of care only required one short phone call.

Afterwards, one of the discussion leaders came up to me to thank me for my input. She emphasized that sometimes people get so caught up in all the reasons why something might not work that they overlook the actual impact the effort will make.

In that moment I was once again reminded that as advocates for our children, we have more power than we can ever imagine. We may not be leaders in the research or medical world, but we have our voices. Mine took my son and me all the way to the White House. Just think of the amazing places yours will lead you. The key is to follow your heart and always "think big." 

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Katrina is a mother of three living in San Diego, Calif. Her oldest son Sean was diagnosed with cystic fibrosis just four days before his second birthday. Together with Sean, Katrina gives speeches at CF Foundation fundraisers, and local biotech firms and pharmaceutical companies about the importance of CF medical research and the impact it makes on families living with chronic diseases. She serves on the Board of Directors for the San Diego Chapter of the CF Foundation and co-chairs the Moonlight Beach Great Strides Walk. She and her husband Robert have committed themselves to keep walking until they find a cure for their son, as well as the 30,000 other sons and daughters living with this disease.

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