I am a Registered Nurse, President and Founder of the Autoinflammatory Alliance (formerly NOMID Alliance) and parent of three boys–one of whom has an autoinflammatory disease.
It is my passion to help increase awareness about autoinflammatory diseases, and empower patients and medical professionals with information, materials and support to help them navigate the complex and challenging path towards diagnosis, and treatment of these rare diseases.
In 2006, I founded The NOMID Alliance (now known as Autoinflammatory Alliance) to help increase awareness and improved care and treatments for patients with CAPS and other autoinflammatory diseases. It was the first, and only organization for all autoinflammatory diseases in the United States at the time. Our mission has always been to help patients of all ages with any of these diseases, and we have continued and refined our efforts with our recent name change to the Autoinflammatory Alliance.
To help educate and increase more awareness, I co-authored the CAPS medical guidebook that was first published in English in 2008, and small comparative disease chart, and the 2012 version in English and Spanish. I am one of the main authors of the first Comparative Chart of Systemic Autoinflammatory Diseases that was was released with the poster presentation with a published abstract at the Autoinflammation 2013 ISSAID Congress in Lausanne, Switzerland. In addition, I have developed and edited our website since 2006, this blog (along with Jennifer Tousseau), and wallet-sized disease information cards for patients on various autoinflammatory diseases.
I have worked in pediatrics for most of my nursing career, from emergency/trauma to research and instructing student nurses in various pediatric units in hospitals throughout the San Francisco Bay Area.
The National Institutes of Health (NIH) is the leading source of research funding for health and biological sciences in the United States. The NIH’s current yearly budget is about $32 billion dollars, which is used to fund research across the … Continue reading →
2016 Highlights for the Autoinflammatory Alliance A special thanks to all our supporters and volunteers that have helped make this year a great one for advocacy, support, and awareness for autoinflammatory diseases. Here is a short list of some of … Continue reading →
The Autoinflammatory Alliance is very pleased to have our new 2015 Holiday Ornament in stock! We will be sending these customizable “Rare Wonder” snowflake photo ornaments to all our donors that have contributed generously this year, volunteered their time, or … Continue reading →