While the rare diseases may be different, the shared, lived experience is universal.
For anyone who missed the world premiere of the "Voice of the Mother" ANGEL AID Mission Video - we urge you to watch (featuring BPAN Warriors Founder and Executive Director, Sarah Chisholm)
As rare parents and as #RAREMOTHERS, we speak a common language and share many of the same obstacles. The #cargivingburden on rare families is unimaginable, particularly for mothers, who experience an inordinate amount of stress, heartache, and grief on a daily basis in what has been coined "chronic PTSD". And while over the last decade great strides have been made collectively in rare disease research, the untold impact on M.others of R.are E.xperience, has "rarely" been addressed.
Operating globally, ANGEL AID CARES offers relief services to caregivers through sustainable health and wellness training, transformative retreats, and a globally connective mother-to-mother network. ANGEL AID CARES believes in uplifting the family by caring for the caregivers, particularly mothers who are the primary caregiver 82% of the time.
We believe that the mental health and welfare of our caregiving community is essential to the wellbeing of all our BPAN children and families. It should come as no surprise that Founder & CEO, of Angel Aid, Cristol Barrett O'Loughlin, a long-time veteran in rare-disease, is spear-heading the expansion of a global program to ensure that the "voices" of our rare mothers are heard and more importantly, that the ongoing emotional, mental, and interpersonal needs are met.
As a young girl, Cristol’s family spent decades living with the diagnosis and demise of her three older brothers. Randy, David and Jared, who passed away at 12, 18, and 19 from the rare genetic disease Mucopolysaccharidosis (MPSII), also known as Hunters Syndrome. While Cristol's industry, marketing and business savvy are impressive, it is her personal connection with the rare disease community that is at the heart of this project.
In July 2020, Angel Aid Cares partnered with Microsoft during the global Hackathon event to help reach more Rare Moms in more countries, and provide even more support and love.
Investing in the ongoing and sustainable welfare of our parent caregivers is a priority for BPAN Warriors and we whole-heartedly support the critical work of Angel Aid in fulfilling their mission.
TO LEARN MORE ABOUT ANGEL AID, RESOURCES AVAILABLE AND HOW YOU CAN HELP PLEASE VISIT:
JOIN THE ANGEL AID COMMUNITY (ONLINE, PRIVATE ONLINE PLATFORM CONNECTING RARE MOMS):
"ANGEL AID is a nurturing and safe community for mothers of children with rare disease. We offer relief - a place to be listened to without judgement, create relationships with women who truly understand, and learn from our network of health and wellness experts."