From day one of my son's diagnosis, my wife Heather and I vowed to do everything in our power to fight for our son. Caring for him, raising awareness about cystic fibrosis and fundraising topped our list. This year, we were fortunate enough to attend the Cystic Fibrosis Foundation's Volunteer Leadership Conference (VLC) for a second time. Connecting with other parents who are like-minded and focused on the Foundation's mission is not only comforting, but needed for insuring that we find a cure for ALL people with CF.
I was fortunate to connect with many great parents during our first VLC in 2015, but also through other chapter events all over the country. I frequently chat, text or call these individuals to brainstorm new ideas and think of ways to make them bigger, better and help them come to life. That is what VLC is all about to me: Having the forum to communicate and collaborate with other parents and employees of the Cystic Fibrosis Foundation.
While at VLC, I had the chance to connect with people I’ve met online but never in person. Finally connecting face to face with Breck Gamel, the passionate mother of a child with CF, was such a wonderful experience. These moments of impact will forever leave an impression on me.
But you don't necessarily need to be there to take advantage of VLC: Watching, listening and connecting with others can all be done via the live stream and social media channels.
So, without further ado, here are my top three takeaways from the 2016 VLC:
3. We can't stop the momentum that we are experiencing right now.
The Foundation is making “great strides” towards treatments and therapies, and this is something we need to continue to support. Real progress is being made, and as CF Foundation President and CEO Dr. Preston Campbell stated, “It's the greatest story in medicine today!"
2. An appreciation for transparency and direction.
Dr. Campbell is very open and informative on how the Foundation spends its resources and the money we are raising. As he stated, “It's about knowing where we are going and how we are going to get there.”
1. The Foundation is adding money to areas that haven't been a point of focus in the past.
We all dream about the day we find a cure, but after listening to Andy Lipman, an adult with CF, speak about his struggles during the “There is No Health Without Mental Health” panel session, I realized that we do in fact need to support the holistic approach to medicine and look at the emotional, mental and physical health of our loved ones fighting CF.
Dr. Bruce Marshall, senior vice president of clinical affairs at the Foundation, explained the many areas they are working on to create and improve. A good example of this is Compass, a free CF Foundation service that I LOVE utilizing. Like many people, I dislike trying to figure out insurance plans more than anything. Aaron Stocks, a CF Foundation Compass employee and an adult with CF, worked with me to select the best insurance plan available for my son through my employer's plans. But not only did he help us select the plan -- he also explained why it would be best for our individual needs. I recommend everyone utilize this arm of the CF Foundation.
With many active families, we have become a community unlike anything I could have imagined. My advice to all of you … CONNECT, CONNECT, CONNECT with others who share your passion in the fight against cystic fibrosis.
And lastly, thank you for all that you do. As a volunteer, advocate and fellow parent of two children with CF, Peter Hodge once told me, “Every single dollar is as important as the last.” It's imperative that we continue the mission of Phyllis Kossoff and the other founding parents of the CF Foundation. I will not, and cannot, let her or any of you down.
