Making a Difference
Who are the members of your family? How long have you lived in the neighborhood?
We are the Schaeffer Family, and we moved to Carriage Hill from Chicago in May 2021. Stephanie is a Cincinnati native, Jeff is from Akron, Ohio, and we have two kids, Nora (age 12) and Dean (age 9).
What do you like about living here?
We love Carriage Hill’s long, beautiful walking paths and all of the wildlife we run into. We love our neighbors and have made some great friends in the neighborhood.
Nonprofit, Charity, etc. Name?
The Cystic Fibrosis Foundation Central Ohio Chapter.
If there is a mission statement, what is it?
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.
What is the history behind this organization?
Since our founding in 1955, we have worked alongside the cystic fibrosis community to effectively transform a genetic disease in a single generation, making CF one of the most amazing stories in medicine today.
When the Cystic Fibrosis Foundation was established in 1955, people born with the disease weren’t expected to live to attend elementary school. Faced with insurmountable odds, but determined to save the lives of their children, a group of concerned parents came together to form the Cystic Fibrosis Foundation.
Today, because of our progress in research and drug development and high-quality, specialized care, people with CF are living into their 30s, 40s, and beyond.
What services are offered?
Cure: As we set our sights on the future, we continue to aggressively pursue a cure for all people with CF. We also recognize that many individuals with CF need better treatments for the serious manifestations of their disease today, and we are committed to advancing new therapies as quickly as possible. We will leverage our successful model for collaborative drug discovery and development to bring the best scientific minds and technology into CF research and catalyze the next generation of transformative CF therapies.
Care: High-quality, comprehensive care has added decades of life for people with CF. We will apply the principles of our pioneering care model—including its multidisciplinary approach, emphasis on data and evidence, and focus on continuous improvement, treating the whole person, and access to care—to optimize health for people with CF as individuals experience the disease differently and modulators continue to transform the CF treatment landscape.
Community: Today, the number of adults with cystic fibrosis exceeds the number of children, bringing new power and energy to our mission as the CF community shapes our priorities and pushes us forward. We are seeking new and meaningful ways to engage the CF community and to become a place where all people with CF and their circles of support feel welcomed. We will continue to champion people with CF in all that we do—enhancing our support for life with CF and expanding the reach of our programs and services to those in need.
The CF Foundation offers support such as insurance, financial, and legal support. They also offer “Compass,” which is a personalized, one-on-one service that provides people living with cystic fibrosis and their families a partner in dealing with challenges related to life with CF. The CF Foundation also offers peer connections so that people can find support from others touched by CF.
What is your story with the organization? (Did you start as a volunteer, is this your full-time job, did someone introduce you, etc.).
Our son Dean was born with Cystic Fibrosis, a rare, genetic, life-shortening disease that affects several parts of the body, most notably the lungs and pancreas, making it hard for people with CF to breathe, digest food, and absorb nutrients. Dean sees several doctors and therapists, and his quarterly CF clinic visits can last 3+ hours. Dean also takes numerous medications and does his nebulizer and the dreaded “shaky vest” every day. These treatments increase when he is sick. Dean has had countless X-rays, pulmonary function tests, blood draws, throat cultures, and a few hospital stays under his belt already. Dean sacrifices a lot each day due to CF, and his disease limits what we all can do in order to keep him healthy and slow the disease progression.
Fighting this disease is a battle that our family fights together. But Dean is not going to be defined by his Cystic Fibrosis. He is resilient, a fighter, and is such a happy kid. He loves competitive swimming, biking outside, and hanging out with friends and family. Dean participates in clinical trials to further research and development of new medicines and treatments to help fight this disease.
As a mother with a child who has Cystic Fibrosis, I have become active in our CF Foundation Central Ohio Chapter’s various fundraising activities. Each year, our team “Dean’s CF Destroyers” raises money and walks in the CF Foundation Great Strides Walk which is typically held in May in cities across the nation. I also volunteer as a member of our chapter’s auction committee, assisting in securing donations from people and local businesses for our auctions at the annual gala and golf outing which are held in the Fall.
How is this organization changing lives?
The Cystic Fibrosis Foundation is helping change the lives of people living with cystic fibrosis and their families who are impacted by it. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation supports a wide range of innovative research programs to discover and develop new and effective CF therapies.
For our son Dean, the CF Foundation has given us a sense of community. It has funded the research and development of every medication and treatment that Dean is taking to help slow disease progression. It has helped us in times when we lost insurance coverage or had to fight to get certain medications covered by insurance. It has helped create accredited CF clinics across the nation so that everyone receives similar care in their management of CF. The CF Foundation has helped push the median age of survival over the years. When the CF Foundation was established in 1955, people were not expected to live to attend elementary school. Now, the most recent 5-year time span shows that the life expectancy for people born between 2012 and 2016 is 43 years. The CF Foundation expects this trend to continue, reflecting how advances in treatment and care continue to help all people with CF live longer, fuller lives.
Are there any annual events or fundraisers? If so, give us a brief description.
Each year, our CFF team, “Dean’s CF Destroyers,” participates in Great Strides, an annual walk held across the country in May. This year, the Central Ohio Chapter’s Great Strides Walk will be held on May 17, 2025, at Sawyer Point Park.
Your support helps the Cystic Fibrosis Foundation fund the research and care needed to help advance a cure for this disease. While we’ve made significant progress, we still have a long way to go. We still lose precious lives to CF every day. You can help us accelerate progress. Now is the time to act. Please take a look at our Great Strides Team page below and consider donating to our team:https://fundraise.cff.org/Cincinnati2025/DeansCFDestroyers.
The CF Foundation also hosts the Central Ohio CF Golf Classic, held on August 11, 2025, at The Golf Club at Stonelick Hills, and the annual gala “Wild About a Cure,” which will be held on September 27, 2025, at The Cincinnati Zoo and Botanical Garden. As an auction committee member, I am always looking for donations from people and businesses. Some local businesses that have donated items in the past are Yelton Fine Jewelers, Eastside Auto Spa, Sonder Brewing, and Woodhouse Spas. Your business will be featured at our silent auctions at the golf outing and gala.
You can learn more at:
Are there ways residents can get involved? (In-person events, donating, etc.)
You can get involved by donating to our Great Strides Team, “Dean’s CF Destroyers” at https://fundraise.cff. org/Cincinnati2025/ DeansCFDestroyers. You can also join us at the Great Strides Walk on May 17, 2025, at Sawyer Point Park.
You can also help by donating items, gift cards, or experiences for our Central Ohio Golf Classic and our gala, “Wild About a Cure.” Gifts are tax-deductible, and your business and support will be featured at our silent auctions at these events.
You can reach out to Stephanie Schaeffer at sschaeffer05@gmail.com for donations.
Are there any last thoughts you’d like to share about your involvement or about the organization as a whole?
Your support and donations would help further CF research and get important medicines to market. All of our son Dean’s medicines and treatments have been created and made possible by the support from the CF Foundation, and by the support from people like you.
Help us get one step closer to a cure for Cystic Fibrosis. Please support our team by donating to our CFF Great Strides team, Dean’s CF Destroyers. We will be walking in May for Dean and for all others affected by this terrible disease.
Or consider donating an item or experience for our silent auctions at one of our events this fall.
Together, let’s make CF stand for “CURE FOUND.”
Organization’s contact so residents can reach out, get involved, or donate:
CF Foundation Central Ohio Chapter: 9370 Main Street #A2, Montgomery, OH 45242. They can also be reached at CentralOhio@cff.org or via phone: 513-533-9300.
For further information, please go to: