If its currently a controversy in the world of rare disease–I’ve written about it. For the past few years I’ve been tackling the hard to talk about topics like medical marijuana for children, the terminology debate over what a cure really is, and how to make the hard choices on medical treatment for our children.
I’m all in. Why? Because I’m a devoted single mom, author, executive producer and President/Founder for StopCAIDNow.org. StopCAIDnow, Inc. is a non-profit organization recognized globally. We are a 501c3 accredited non-profit. The foundation is focused on treatments, awareness, diverse genetic testing, and genomics.
Earlier in my life I spent time overseas in London, working as a counselor to juvenile delinquents in jail with a background in gangs. I gave psych evaluations for the Chief of Police and spoke on behalf of CSA. I’ve also spent much of my time volunteering–everything from homeless shelters to the National Institute of Health.
My friends would label me a “DAME” which stands for Determined, Ambitious Mom, Endlessly looking for a cure.
It was nineteen months before my son received his diagnosis of Atypical Blau Syndrome and even though we had succeeded at naming the disease–I was left feeling hopeless. We had no prognosis on what the rest of his life would look like and what kind of challenges he would face. Medications were dangerous decisions–and often we had to weigh whether or not giving him an adult dose or an off label injection would be the right choice.
Even though are differences may vary slightly, I knew there were many other families struggling with children diagnosed with auto inflammatory diseases–which is why StopCAIDNow is the first organization to blanket all of these syndromes.
Being a mom of children with rare diseases means making tough choices. Between treatments that can be more dangerous than they are helpful, surgeries that require so much time, energy, and support and being an advocate for your child–not just in an immediate sense, but on a global scale for the awareness of their diseases–parenting rare is no easy feat.
My series will work to inspire parents to channel their inner leader and fight for change on a legal, pharmaceutical, emotional and educational playing field. Together, we will explore controverstial topics, social issues and all of the complex and rewarding facets that go into being the mother of someone who in every way is truly unique.
Learn more about Lisa and StopCAIDNow by clicking on the image below.