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Cystic Fibrosis Cornerman

The story of my wife's fight with cystic fibrosis, lung transplant, and what I learned from it all.

Month

February 2020

Young People Joining Tomorrow’s Leaders

As the former chair and council member, our vision of our Tomorrow’s Leaders group is filled with people that start early, people that grab the baton and continue running toward a cure. This can help both the CF Foundation and the individuals that become members in so many different ways!

We will have new ideas as well as people to help implement them. We will make organizational connections with companies where these new members are employed that have a ton of different ways they can support us. We can utilize professional and personal networks to recruit additional members that may be interested in being involved. And finally, we can help those people learn how good it feels to put their time and energy into a good cause. That is something that they can take with them as they continue to grow and mature.

They say it isn’t what you know, it’s who you know. Being involved with a non-profit like Tomorrow’s Leaders will not only help them learn new skills, but it will introduce them to a larger network of truly phenomenal people. People in so many industries and such varied roles.

So, as we connect with more young people, let’s get them involved. If their interest is networking, we have so many interesting and accomplished people in our group. If they’re looking for leadership experience they can help plan one of our signature events, maybe lead the planning, or even join the council. And if they’re looking for a fun way to socialize with some great people we’ve got that too. Whatever their vision for themselves may be, we have a great story to tell why it aligns with our vision to not only grow Tomorrow’s Leaders, but to find a true cure for this disease.

Why I Volunteer

I would often ask my wife, should we fundraise and do a CF Foundation walk? She would often push it off until the next year because she just didn’t have the time and energy. I was content to wait since she was the one who suffered from CF. At the same time, SHE was the one who suffered from CF. It’s not surprising that she was not looking to add another thing to her full plate of working full time, traveling, and dealing with all her treatments. It wasn’t until after I was nominated to be a Milwaukee’s Finest candidate that I realized that she didn’t need to add anything else to her plate. This could be something I could do. Of course, in retrospect it seems kind of obvious but trust me, this was a real revelation for me.

During Finest, I saw first-hand all the great ideas and events that other candidates put on and I was inspired to come up with some creative ideas of my own. I planned a happy hour, organized a self-defense class, executed a letter writing campaign, and shared Rebecca’s story with friends that had no idea she even had CF. I personally raised over $10k and learned about the Foundation in the process. After that, all I wanted was to help further the cause. That new, sustained interest and dedication is exactly what the foundation needs to help us develop a cure.

A cure means so much to me personally as I’ve seen my wife struggle with this disease for years. 20 years ago it included a lot of time doing treatments, several illnesses, and an overall lack of energy. 10 years ago it involved managing supplemental oxygen while she slept and exercised as well as seemingly endless visits to the hospital for planned and unplanned appointments. 5 years ago it almost seemed too late as she went into respiratory failure on a ventilator and in a chemically induced coma.

I remember going in the hospital room and just sit there waiting for any sign of improvement. I was happy for the work I had done with the foundation and my only regret was that I had not started sooner. I wished we had more time to share Rebecca’s story when it was a success story. We could have spread awareness and involvement and made more of a difference.

But as she stayed on the ventilator for months, I remember thinking about other families that had gone through this or that might go through this in the future. And after Rebecca received a double lung transplant and survived, it was humbling and deeply impactful to hear the stories of those who did not make it out of the hospital. I continue to volunteer, not because of an expectation that it will help Rebecca. I volunteer because I want to make sure that the next generation does not have to go through what she did, or worse.

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