Daisy's Diamonds

In June 2024, our little Daisy was rushed to the hospital with pneumonia that led to a collapsed lung. After two weeks on oxygen, she began to recover—only to be readmitted just days later when the pneumonia returned. She was transferred to a hospital 91 miles from home, where a team of specialists ran tests, performed an MRI, and ordered a comprehensive genetic test. On 7 May, we learned that Daisy has Shashi-Pena Syndrome (SPS), an extremely rare and complex genetic disorder that only about 50 other people in the world have. 

We’re raising money in Daisy’s honor to fund research and support other families who may face this difficult journey. Our hope is that Daisy will grow up not just living with Shashi-Pena Syndrome, but leading the way—proving that rare doesn’t mean powerless.

In August, Daisy's family and friends will take 2 MILLION STEPS to raise funds for the ARRE Foundation, a parent-led patient advocacy organization dedicated to advancing research for Daisy's genetic condition. 

Please make your donation today to support our steps, honor Daisy, and fund more research for her rare disorder.

The ASXL Rare Research Endowment (ARRE) Foundation is a family-led patient advocacy organization focused on advancing knowledge and understanding of ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome) with the goal of developing effective therapies and medical interventions. 

We are raising funds for research, building and continuously expanding the network of clinicians and scientists who are committed to studying the ASXL genes and their associated disorders, developing resources for clinicians and parents to improve clinical outcomes, and facilitating collaborations among health professionals who have experience treating ASXL syndromes.

From research grants for scientists to educational events for families, your gift to the ARRE Foundation is supporting a brighter future full of knowledge and hope.

The ARRE Foundation (Tax ID 82-3890665) is a family-led, 501c3 nonprofit organization dedicated to education and research for ASXL-related disorders. All contributions are tax deductible in the United States to the fullest extent of the law.