After the Diagnosis: What’s your Plan?

The Sturge-Weber Foundation and Inspire have partnered to bring patients and caregivers this free educational webinar on:

February 20, 2019
12 - 1 PM ET


Join the Sturge-Weber Foundation (SWF) as Karen Ball, SWF Founder and CEO, and Josephine Suarez, Behavior Specialist and Therapeutic Mentor, discuss the importance of a plan after a diagnosis of Sturge-Weber syndrome or another rare disease and how to avoid the pitfalls along the way. In this webinar you will learn tips and strategies around finding the right support and services while navigating the next steps in your plan.


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Sturge-Weber Foundation



The Sturge-Weber Foundation’s (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions through collaborative education, advocacy, research and friendly support.

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Inspire is the leading healthcare social network, with 10 million users representing more than 3,600 health conditions in categories including chronic conditions, cancer, rare diseases, and more. Inspire’s mission is to accelerate medical progress through a world of connected patients. Inspire partners with over 100 nonprofit patient advocacy organizations.

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Webinar Speakers

Karen Ball

About this webinar

Karen Ball is first and foremost the mother of two creative and affectionate children with special needs. She graduated from Baylor University and is an alumnus of Up With People. As the inaugural Betty Ford Award recipient, she is recognized for her tenacity. Karen is the founder, President & CEO of  The Sturge-Weber Foundation. Karen served on the Board of Directors of the National Organization for Rare Disorders for ten years and currently serves on the Board for the Coalition of Skin Diseases, and the American Brain Coalition. Ms. Ball is a guest editor and author. She has collaborated with the National Institutes of Health to co-host symposiums on Sturge-Weber syndrome which resulted in new innovative scientific research investigations on the syndrome.

Josephine comes from South Eastern Connecticut and is a mom of five which includes Juliana whom is 16 and diagnosed with Sturge-Weber syndrome type 1. Josephine comes with well over 25 years of experience in the field of “Differently Abled” individuals of all ages and abilities. Josephine currently works in the social work field supporting children of all abilities and their parents fight for their rights within the school systems, mental health system and ability support systems.

Josephine Suarez