Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin

ONCE UPON A GENE - EPISODE 084 Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O’Loughlin Angel Aid Cares works to provide connection, relief and support to caregivers. The founder, Cristol O'Loughlin is sharing her story that begins with her role as a rare sibling and unfolds with heartbreak, passion, grit and grace.  EPISODE HIGHLIGHTS Tell me about your childhood and how you're connected with rare disease. I am the youngest of five children. I have 4 older brothers and my oldest brother is still living. Three of my four brothers were born with Mucopolysaccharidosis (MPS) disease, also known as Hunter syndrome. My brothers were very sick and passed away at 12, 18 and 19 years old.  Tell us about Angel Aid Cares. In my mid twenties, I started thinking about having a family and the questions around fertility and being a carrier of a rare and deadly disease. I started looking into genetic testing and what I learned about MPS was impactful enough that I wanted to do something about it. I met other families and children at a conference and came back with a lot of passion in my heart. I connected with my sorority sisters and we decided to fund raise with the National MPS Society. We threw parties and pulled together money, it was matched by the National MPS Society and we launched and released our first research grant. That grant went to a researcher named Dr. Emil Kakkis, the CEO of Ultragenyx. He had the novel idea to take a missing enzyme and create a synthetic version to flush through the body. That research went on to clinical trial and eventually standard of care treatment for young patients of Hunter syndrome. Young men who used to pass away in their teens like my brothers are now on active treatment. What's missing from the rare disease community is the mental health and wellness resources that Angel Aid Cares is focusing on. We launched as a 501c3 and we focus exclusively on mental health and wellness services for mothers and all caregivers in the rare disease space. What do you want listeners to take away from this episode? Sustainable self care comes from small little things you do to remind yourself that you are you. Separate from the person you're caring for, you deserve the love, empathy and care you give to others. If you need help, text SIGNS to 741741 and access the 24/7 Crisis Text Line. CONNECT WITH ANGEL AID CARES Angel Aid Cares Website https://www.angelaidcares.org/ Angel Aid Cares on Instagram https://www.instagram.com/angelaidcares/ Angel Aid Cares on Facebook https://www.facebook.com/angelaidcares Angel Aid Cares Resources https://www.angelaidcares.org/partners Angel Aid Cares Events https://www.angelaidcares.org/events LINKS & RESOURCES MENTIONED Bloodstream Media - Once Upon a Gene https://www.bloodstreammedia.com/shows/once-upon-a-gene Caring for the Caregivers TEDx Talk https://www.angelaidcares.org/tedx National MPS Society https://mpssociety.org/ Ultragenyx www.ultragenyx.com CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Fecha de Publicación: 27 de mayo de 2021

Duración: 57 min