As we recognize Rare Disease Day on February 28th once again, we?re coming together to support Gabe and the millions of individuals living with rare diseases. Their strength continues to inspire us, and the fight carries on each and every day. We remember and honor those who are no longer with us, and we remain committed to creating meaningful change together.

This year, all proceeds will once again benefit Grant's Giants, an incredible nonprofit dedicated to providing financial assistance to families affected by pediatric Pompe disease. Beyond direct support, their mission includes advancing critical research and advocating for expanded newborn screening so that future generations can receive life-saving treatment from the very beginning.

Gabe?s journey continues to be shaped by both challenges and remarkable medical care. His biweekly infusions at Children's Hospital of Philadelphia, amazing Nurses and Child Life Staff, and the support of an entire team of specialists help him live a full and vibrant life. Unfortunately, not every family has access to these same resources. The cost of travel, treatments, and frequent medical appointments can place an overwhelming burden on families, especially those who must travel long distances for specialized care.

Research remains essential in the fight against rare diseases like Pompe. Thanks to medical advancements such as Nexviazyme, Gabe has experienced meaningful improvements in his strength and stamina. Progress like this is only possible through continued research, advocacy, and the unwavering support of our community.

Gabe?s story also highlights the critical importance of early diagnosis. When he was born, Pompe disease was not yet included on Delaware?s newborn screening panel. Earlier detection and treatment could have helped prevent some of the complications he faces today. Because of the dedicated advocacy work led by organizations like Grant?s Giants, Pompe disease is now part of Delaware?s screening program?but many states still have work to do. Expanding universal newborn screening remains vital so that no other child has to face avoidable delays in care.

Together, we can continue making an impact. Every donation truly matters, and your support means more to our family than we can express. To ensure shirts arrive in time for National Pompe Day on April 15th, orders will close on March 16th. Don?t miss this opportunity to raise awareness and support families who need it most.

Let?s keep pushing forward?advocating for change, supporting research, and standing alongside every family affected by Pompe disease.