Pennies for Perri was a Massive Success!
Pennies for Perri, held on March 7th in Newport Beach, CA raised over $133,000 for our Chromosome 18 families. Thank you to Jan and Jesse Poggio, as well as their committee, for organizing an incredible event. We are grateful for the event's sponsors and for everyone who attended. A very special thank you to Jersey Mike's for their generous donation of $74,000!
| | | 2026 Starfish Dash 5k Run/Walk & Health Fair | | Our annual 5k and health fair is next month! The Dash will take place Saturday, April 25th in San Antonio, TX. This is a free, official FIESTA San Antonio event! For members unable to attend in-person, please join us for our 2026 Virtual Starfish Dash! | | |
2026 Annual Family Conference | |
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This year, Conference will take place July 12th-15th in San Antonio, TX.
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Don't forget to book your room at the official Conference hotel, Westin San Antonio North to be in the middle of all the action.
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For the first time, we are offering special early-bird pricing through April 30th!
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Scholarship applications for the 2026 Annual Family Conference are open for first-time attending families who struggle to attend Conference because of the cost involved.
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Upcoming Events
March Facebook Live - If you missed the live Q&A with Dr. Brian Faux, a pediatric neurologist, on March 18th, view the recording here on Facebook!
Starfish Dash 5k Run / Walk & Health Fair (San Antonio & Virtual) - This is our 9th year hosting our official Fiesta San Antonio event. Join us April 25th, either in-person in San Antonio at 8am CT or virtually any time the day of the Dash!
Self-Advocate Pet Night - Self-advocates, hop on Zoom April 13th at 6pm CT with your furry, scaled, or feathered friends!
Conference Early-Bird Registration - Early-bird registration for Conference will close April 30th.
April Facebook Live - Hear from Jacqui Lowrie, author of Charley's Light, on Facebook April 18th at 6pm CT for a conversation that will stay with you long after it ends.
New Family Resource & Intro Zoom Call - We invite our families new to Chromosome 18 to join us for an opportunity to learn more about C18, connect with our resources, and meet other members via Zoom on May 5th at 3pm CT.
Connect with Dr. Cody: Clinical Research Center Tour - Tour the Research Center virtually on Facebook Live June 4th at 11am CT, then switch over to Zoom after the tour for a great opportunity to talk directly with Dr. Cody.
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Clinical Research Center
This month's article is part two to February's article, which focused on many interesting aspects of gene therapy in the context of treating chromosome 18 conditions. Part two gives valuable insight into viable approaches for new treatments.
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Research Center Tours
In March, the Clinical Research Center welcomed visitors for two special tours. One tour was hosted for the Kronkosky Foundation, an important community partner in San Antonio that supported the Trisomy 18 study in early 2025. The Center also opened their doors for a community tour, giving individuals the opportunity to visit the lab in person and learn more about the important research happening.
| | Pictured left to right: Aamuktha Pentala, Dr. Jannine Cody, Lori Stinson (Kronkosky), Allan Paterson (Kronkosky), Anna-Melissa Cavazos (Kronkosky), Dr. Jon Gelfond, and Brittany Antopia | | Pictured left to right: Neale Parker, Audrey Harzke, Dr. Jannine Cody, and Patrick Kaminski (Chief Strategy Officer at UT Health San Antonio) | | Our next Clinical Research Center tour will be held live on Facebook June 4th at 11am CT! Click here to learn more and register for the Zoom Q&A with Dr. Cody that will take place right after the tour. | |
Demyelination Clinical Trial Readiness
Five people received MRIs and blood draws on March 11th, 2026 to receive background data to apply for a NIH grant. For preliminary data, five local participants were evaluated for MRI, VEP, processing speed, and serum MBP levels.
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Rare Disease Day Tabling Event
Kayla Schilly (pictured left), our Member Engagement and Logistics Assistant and a Chromosome 18 sibling, promoted rare disease awareness for her Health Science Capstone at Truman State University. Along with a Chromosome 18 Rare Disease Day social media campaign, Kayla tabled at Truman State alongside her capstone partner, Evelyn (pictured right). The tabling event focused on teaching future healthcare providers about rare diseases.
| | Thank You to Our Legacy Society Members | | | | |
