INAD is an inherited degenerative disorder of the nervous system. It starts early in life and progresses rapidly. It usually develops between six months and three years of age. Children affected will lose all acquired skills including mental and cognitive abilities (as seen in Alzheimer's) and physical abilities (as seen in Parkinson's), resulting in death likely before they reach their 10th birthday.
On the same day as the diagnosis, my best friend Emily and her daughter, Chloe, arrived for a visit from California. I was so happy to have them there, especially being so far from my family. The first thing Chloe did when she walked into our apartment was sit down next to Leo and kiss him.
That is when “Bisous for Leo” (Kisses for Leo in French) was born. We have always been people of faith and knew there must be some greater purpose to this diagnosis. Today, our campaign helps raise funds and awareness for INAD, through the INADcure Foundation.
In September 2018, Bisous For Léo launched an Instagram account (@BisousForLeo) encouraging its followers to help kiss INAD goodbye. People from all around the world have been posting their kisses, some of which include Isla Fisher, Zoe Saldana, Eva Longoria, Sebastian Stan, Gal Gadot, and many more. The campaign has shown just how powerful a single kiss can be.
We are an ancillary arm of the INADcure Foundation, the only non-profit organization dedicated to INAD and funding scientific research for cure and treatment options. At the time of Leo’s diagnosis, there was nothing. Six months later, he became part of the first clinical trial for the drug RT001, with hopes of slowing the progression of the disease. While it is not a cure, it could be an extension. In the meantime, we continue to work hard everyday to raise funds for research development in gene therapy (our potential cure) in hopes of giving Leo, and all the INAD children, a chance at a future.
INAD is considered a neurodegenerative disease. Neurodegenerative diseases affect millions of people worldwide. Alzheimer’s and Parkinson’s Disease are the most common types, with more than five million Americans living with Alzheimer’s, and at least 500,000 Americans living with Parkinson’s. Children with INAD share a gene mutation with some forms of Parkinson’s (PLA2G6) and also have the same pathogenesis as Alzheimer’s and Lewy Body Dementia. Finding a cure for the infant forms of the diseases could lead the way to finding better treatments and ultimately a cure for the adult versions. Treating patients as early as possible has been shown to be most beneficial, which is why working quickly to find the cure is key.
Since INAD is so rare we need to continue to raise further awareness for the disease. The more awareness, the greater chance at preventing any more children from getting it. We are incredibly grateful to everyone who has supported us thus far. The campaign has grown beyond our wildest expectations and we are hopeful that it will continue to grow. If you would like to help you can do so by donating at BisousForLeo.org and posting your kisses on Instagram in support, tagging @BisousForLéo.
With everyone’s continued help, we can hopefully not only kiss INAD goodbye, but also Parkinson’s, Alzheimer’s, and Lewy Body Dementia. Together we can do this.
