BPAN Warriors is lovingly maintained and supported by families, friends and community members who share a common mission:
"To actively support, facilitate and expedite therapeutic initiatives and scientific research that will enhance the quality of life for individuals living with BPAN by mobilizing and empowering BPAN Warrior families worldwide, through access to community resources, information and most importantly, CONNECTION to our BPAN Warrior Tribe."
Our goal is to provide a safe and compassionate online forum, where families, friends and caregivers alike, may share their personal experiences in a variety of areas. Although the science behind BPAN is ever important, we recognize that sometimes the real story, the "human" story can often times get overshadowed by the medical facts, the scientific research and the all too harsh and clinical realities of a BPAN diagnosis. While we never want to diminish the facts, we also want to embrace the "WHY" behind our mission.
The "WHY" is the individual story behind the families who care for each child who is born with the WDR45 genetic mutation, who courageously lives with this diagnosis. So much of what inspires each of our BPAN Warrior families every day to seek answers, to press for a cure, to embrace the challenges and have gratitude for the small triumphs, rests squarely in the basic human story of the earliest connection between parent and child.
We want to pay homage to that relationship and to the subsequent relationships that connect and root each and every BPAN Warrior family to their community. The quality of life we wish to provide our BPAN Warriors begins with the quality of care we provide one another.
We wish you all the best on this journey and hope that you may meet each day with:
HONESTY, VULNERABILITY, COURAGE AND COMPASSION
A Letter from a
At the end of 2012, I gave birth to a beautiful baby girl, Eva Marie. She was an amazing addition to our family and to some extent, was an incredible healing salve for some of the pain and loss I felt after burying her brother RJ, who was born very prematurely in December of 2010. To be sure, Eva was be the third and last of our all-girl Chisholm Clan, Ella, Emma, Eva. Three incredible girls, three different personalities, all so completely loved and cherished...READ MORE