"One of our greatest tests is to see if we are able to bless someone else while we are going through our own storm."
The DiStefano family was rocked when two of their young sons were diagnosed with rare diseases (primary immunodeficiency, possible bone marrow failure syndrome). The journey towards rare disease identification and treatment is stressful and challenging. Finding answers for final diagnoses and treatments is ongoing and time-consuming. However, the DiStefanos do not want this struggle to be the only path on their rare disease journey. Providing support to others who may also be navigating rare diseases is a way to turn some of their challenges into something positive. By creating this foundation, the DiStefano family can work together on a common goal and create something helpful on a path that has felt so helpless.
"Be A Wonder" plays on the name of the book/movie, "Wonder". The word, wonder, is meant to encourage the idea that it is okay to be unique and to be rare.
Rare diseases are truly wonders. Instead of simply being complications, and impacting life in negative ways, these wonders can have powerful positive effects. With support and advocacy, patients and families impacted by "wonder" diseases can have a profound impact on the future of medicine and offer support to other people with unique challenges.
"Be A Wonder" also advocates for everyone to register to be a bone marrow donor (BeTheMatch.org) and donate blood. For someone in need of a life-saving bone marrow transplant, it is truly unique and rare to be a match. The chance to save a life in a unique and rare way makes everyone who signs up a "wonder", and gives those needing a transplant hope that something "wonder"ful could happen.
You truly are a "wonder" to anyone in need of a life-saving bone marrow transplant. We encourage everyone to Be A Wonder.
Rare diseases require a lot of "outside of the box" thinking and solutions. The initial pathways toward diagnosis and treatments are almost always not the final ones. Just like the journey to battle a rare disease, the Be A Wonder Foundation will adapt to the changing needs of the rare disease community and progress of medicine.
Many other diseases and conditions are able to generate significant support, funding, and advocacy because there is a high volume of patients. Rare diseases are rare conditions and, therefore, have a lower volume of patients affected with each disease, if a concrete diagnosis is even determined. As a result, support for patients and families, funding for research, and advocacy can be much more difficult to achieve. The Be A Wonder Foundation's mission is targeted to help advance, achieve, and fund the needed support, research, and advocacy that is often overlooked. The collaborative and collective efforts of the foundation are inclusive of all rare diseases to support the rare disease community.
The Be A Wonder Foundation is officially recognized as a public non-profit charity.
"Alone, we can do so little. Together, we can do so much."
The Be A Wonder Foundation
will emPOWER those affected by rare disease to ATTACK their disease and be STRONG in their journey POWERed by the support of knowledge, research, and others.
The Be A Wonder Foundation supports patients and families affected by rare diseases by providing resources to promote advocacy, research, education, and direct assistance for rare disease challenges.
Meet The Team
(Board of Directors TBN)
Lindsay & Mike DiStefano
Parents, Warriors, Advocates.
"One person can make a difference, and everyone should try."-JFK
Three brothers affected in their own ways by rare disease.