Community Forever
By Laura Spiegel / Originally written in December 2017
Earlier this month, I had the opportunity to attend the North American Cystic Fibrosis Conference here in Indianapolis. While I knew that I would learn about the latest and greatest in CF management, I was unprepared for the second, more meaningful gift that this experience gave to me.
The gift of community.
Those of us who live with CF or care for a loved one with CF know of the power of community. Whether it’s individuals we connect with online, blogs that we faithfully follow, or otherwise, the opportunity to connect and share with others on a similar journey is all around. But every now and again, we experience a moment or two of community that is more than just a shared word or experience. It is palpable.
This is what I felt at the NACFC when I found myself at a lunch gathering of other activated parents, passionate scientists, and one remarkable gentleman who lives with CF. It was orchestrated by a Florida-based father who wanted to connect individuals from across the country to eat, share, laugh, cry, and simply be together.
As our lunch began, we were introduced to a small team of scientists from the pharmaceutical company that has spearheaded many of the latest CF drug advancements. I’ve met a few scientists in my day, but I have never before met people like this. Their commitment to finding therapies to treat the genetic cause of CF – and to one day find a cure – was electric. This is the team that, along with the Cystic Fibrosis Foundation, hopes to have triple drug cocktails available for 90% of the CF population by 2020. What encouraging news for individuals like my daughter who haven’t been able to benefit from Kalydeco or Orkambi.
I also met a couple from New York whose son has CF. He is in his mid-twenties, just recently got married, and has a successful career in Finance. They also have a beautiful and brave daughter who lost her battle to CF years ago when she was a teen. As I listened to their story, I marveled at how their family had truly experienced the full spectrum of it all, and how incredible it was that they were able to share their journey and bring hope and strength to all of the others in the room.
Finally, I met a local gentleman with CF who is an active police officer, a husband, and a proud new father. It meant so much to hear his story and shake his hand. I can only hope that my own daughter has his strength and compassion as she grows.
This group of people from all over the U.S. would never have come together had it not been for the common thread of CF. Although we each brought unique experiences and perspectives to the table, our laughs, tears, hugs, and cheers that day were united.
I believe that angels walk among us every day. The people in this room who shared their stories of perseverance, courage, and faith were angels to me. They made me hold my head a little higher and lit my smile a little brighter. They stoked the fire within me to keep on believing and encouraging and connecting until a cure is found. And it will, one day, be found.
#CysticFibrosis #CourageFaith #CommunityForever