INSPIRED IMPACT is an ongoing blog series that gives voice to social entrepreneurs and leaders of mission-driven organizations who are making an impact in their communities, industries, and around the world.
Jennie Weiner is the Development Manager for the Cystic Fibrosis Foundation-Rocky Mountain Chapter. Follow them on Facebook, Instagram and LinkedIn and learn more at cff.org/rockymountain.
WHAT DO YOU DO?
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care. We have chapters across the country focused on fundraising events and raising awareness, and our local Rocky Mountain Chapter covers Colorado, Montana, New Mexico, and Wyoming. I personally work on the logistical planning for our Rocky Mountain’s Finest Young Professionals Event, our CF Chefs Challenge, and our Breath of Life Gala, and the fundraising and logistical side of our CF Xtreme Hike. However, we are a very collaborative office and support each other on other events as well.
WHY DO YOU DO IT?
The CF Foundation is the world’s leader in the search for a cure for cystic fibrosis, and nearly every CF-specific drug available today was made possible with our financial support. We are a donor-funded, 501(c)(3) nonprofit that is fully accredited by the Better Business Bureau’s (BBB) Wise Giving Alliance program. For me, it was initially just a job. I was moving to Denver from the DC area and wanted to find a new nonprofit to work for and was hoping to get more involved in fundraising events because I also have an event planning background. Once I started meeting our CF fighters and their family, it became much more than a job. It became a mission to raise more money every day to find a cure for this horrible disease.
WHAT IMPACT ARE YOU MAKING?
I’m a small entity in a Foundation that is doing incredible work to fight cystic fibrosis. Our goal locally is to connect with the families and help to strengthen the community we have here. Nationally, the Foundation has supported the development of nearly every CF drug and doubled the life expectancy for someone born with CF. A few decades ago, most people with CF didn’t live long enough to attend elementary school and now many people are living into their 30s, 40s, and beyond, pursuing careers, getting married, and starting families.
WHAT (OR WHO) INSPIRES YOU TO MAKE THIS IMPACT?
The first time you meet a child or adult with cystic fibrosis, you will immediately want to help them. It’s amazing to hear their stories of perseverance. Every single day, they take dozens of pills, complete hours of airway clearance treatments, and focus on their health while also going to school or work, and then waking up the next day to do it all over again. And after all of that, some patients must receive transplants, and it’s pretty incredible to see someone breathing on their own again with a new set of lungs.
WHAT’S YOUR BIG DREAM FOR THE ORGANIZATION AND THE IMPACT YOU WANT TO MAKE?
We always say “Until it’s done.” We currently have medicines that help a huge percentage of the CF population but there is a piece of the pie chart of people who will never benefit from those medications. We will not stop fundraising, so the doctors and scientists will not stop researching, until every individual has a path to the cure and CF is a disease of the past. We hope to no longer work for the Cystic Fibrosis Foundation because we don’t want there to have to be a Cystic Fibrosis Foundation.
WHAT RESOURCES DO YOU NEED TO MAKE THOSE DREAMS COME TRUE?
Money and smart people. In Colorado we have one of the top research centers in the country, working hard every day to do clinical trials to help find a cure. We also rely on brave patients to enroll in those clinical trials. Unfortunately, nothing in healthcare is inexpensive. We host many events each year locally in order to reach as many people as possible. Besides donations, people can attend, volunteer on the day of, volunteer on the planning committee, support through their company, and all of that helps us to fundraise and further our mission.
WHAT IS (OR HAS BEEN) YOUR BIGGEST CHALLENGE?
CF is known as an orphan disease, because there are only about 30,000 people nationwide who have it. Because of this, we receive no government funding. The best response to that has been the outpouring of support from the community who has fought this disease for years by holding events, raising funds, and raising awareness for the Foundation.
WHAT WORDS OF ADVICE DO YOU HAVE FOR OTHER LEADERS LOOKING TO MAKE AN IMPACT?
One of our cultural values is “Keep Sight of What Really Matters” and I think that’s really important. There are many days that we spend in front of a computer reading contracts, submitting website content help tickets, and feeling like our impact is not going much further than the walls of our office. But on the days where we are out in the community, especially at our events, it reinforces why we need to continue to do what we do.
HOW CAN OTHERS SUPPORT YOU OR YOUR CAUSE?
The easiest (and most fun way) is to attend or volunteer at an event! We have walks, a stair climb, a hike, a cycle, a foodie event, a young professional event, and a glamorous gala. We feel there is something for everyone and if there isn’t something for you, we will even help you start an event to raise funds.
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