Come for the Celebration.
Leave knowing you help change lives!
In our pursuit to raise awareness and advocate for Perri, Jesse and Jan—together with the help of close friends and family—launched Pennies for Perri, an annual fundraising event held on or near Rare Disease Day, which falls on the last day of February. Through this event, 100% of the proceeds are donated directly to the Chromosome 18 Registry & Research Society, an official 501(c)(3) nonprofit organization that is incredibly close to our hearts.
As of 2026, we have raised over $215,000, all of which benefits the Chromosome 18 Registry & Research Society and allows them to fund critically needed research. In addition, Jesse was honored with a board position as Director at Large for C18, where he continues to be driven by a desire to make a positive and lasting impact.
The Chromosome 18 Registry & Research Society is deeply important to our family, as it is the only organization in the world dedicated to supporting individuals affected by Chromosome 18 conditions—including our daughter, Perri, who was diagnosed with Distal 18q- and, as a result, experiences total hearing loss along with other unique medical challenges. The Society has had a profound impact on our family, and through Pennies for Perri, our mission is to help ensure they can continue supporting families like ours.
Each year, we invite businesses we admire to donate items for the raffle at our Pennies for Perri fundraising event. These generous contributions allow us to make a meaningful difference in the lives of children and families affected by Chromosome 18 conditions. If you are interested in supporting our mission and would like to donate an item, we would love to connect and share how your contribution can help positively impact so many families.
Here is what the
money raised at
Pennies for Perri
is going to support:
- $500 buys establishing cell lines for 1 family
- $1000 buys 1 person’s microarray
- 10,000 buys one comprehensive clinical evaluation
- $100,000 buys 1 mouse model project
- $1 million funds the whole Chromosome 18 Registry & Research Center for a year
Why Donate?
Donating to Chromosome 18 supports vital research and initiatives that improve the lives of individuals with chromosome 18 abnormalities. Contributions aid in advancing scientific understanding, developing treatments, and providing resources for affected families. By donating, you become part of a compassionate community dedicated to making a real difference in the lives of those impacted by these genetic conditions. Your support helps continue essential work and fosters hope for a brighter future.
With your help, we can make a BIG difference!
With your help, we can make a BIG difference!
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