Marfan Diagnosis and the Family : A Mother's Perspective

The On-Air Advocate

As we continue our Marfan Awareness Series, I am so excited to welcome Allison Pullins, Volunteer, The Marfan Foundation. Allison Pullins is a healthcare technology executive with 15 years of industry experience. She has guided and executed corporate strategy, and built teams across marketing, sales, product, and customer success. As COO of MD Ranger, Allison leads the operations of the company and charts its strategic vision. Allison serves as President of the Big City Parents Organization, which helps disadvantaged families access high-quality early childhood education in San Francisco, California. She is a member of the Strategic Development Committee of The Marfan Foundation, an organization that she volunteers for in many capacities. Allison lives in San Francisco, California, with her partner and their two children. Her oldest child James (age five) was diagnosed with Marfan syndrome when he was two years old. James lives with multiple heart conditions, including aortic aneurysm, low vision, and low muscle tone, among other disabilities. He is a bright, curious child who enjoys math, geography, Star Wars, and music (particularly grunge rock and hip hop). James inspires Allison to increase awareness for connective tissue conditions, advocate for the rights of disabled people, and fundraise for research to eventually cure these life threatening genetic conditions. Listen in as Allison shares her perspective and their journey with receiving the diagnosis of Marfan syndrome for their oldest son and the impact it has had on their family. Resource: The Marfan Foundation - www.marfan.org The On-Air Advocate - www.onairadvocate.com #MarfanSyndrome #MarfanAwareness