According to the National Institutes of Health, there are over 7,000 rare diseases currently affecting people around the world. There’s only one – that we currently know of – where helping the children affected can potentially also benefit 50 million adults. It’s called Infantile Neuroaxonal Dystrophy (INAD) and Bisous For Léo (BisousForLeo.org) is striving to eradicate it.
Here, their team shares the most commonly asked questions about INAD and Bisous for Léo.
What is it?
Infantile Neuroaxonal Dystrophy (INAD) is a rare inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills. Symptoms typically begin within the first two years of life, with the loss of head control and the ability to sit, crawl, or walk, accompanied by deterioration in vision and speech. There is no cure for INAD and no treatment that can stop the progress of the disease. There are approximately 150 children around the world who currently have INAD and their typical life span ranges between five and 10 years.
What does INAD have to do with adults?
There have been numerous studies that address the link between INAD and Alzheimer’s disease, Parkinson’s disease, and Lewy Body Dementia. The kids who have INAD share the exact same gene mutation with some forms of Parkinson’s and have the same pathogenesis and neurofibrillary tangles as those affected by Alzheimer’s and Lewy Body Dementia. Instead of saying there are “only” 150 children worldwide who have INAD, Bisous For Léo is shifting the dialogue. Children with INAD are an integral piece of the larger neurodegenerative disease puzzle.
What is Bisous For Léo?
Bisous For Léo is an ancillary arm of the INADcure Foundation, the only US-based non-profit trying to identify treatment and cure options for the disease. INADcure and Bisous For Léo were both founded by parents whose children have INAD. Together the entities are racing the clock to not only save their own children, but all of the children with INAD globally.
How can you get INAD?
INAD is autosomal recessive, meaning that both parents must be carriers of the mutation to potentially pass it on. In other words, neither parent displays symptoms of any kind so the mutation is unwittingly passed down. In a standard pregnancy, there is a 25% chance that carrier parents will pass on their recessive PLA2G6 gene and have a child with INAD, a 50% chance that the child will be a carrier like his/her parents but not have INAD, and a 25% chance that the child will neither be a carrier nor have INAD.
Does my doctor automatically test for this?
Currently INAD is not included in the standard pregnancy panels. You must be aware of it in order to advocate for yourself when genetic testing.
How are people getting the word out about this?
There is an ongoing “kiss campaign” running on social media where people post their bisous (kisses) in support of the cause, while tagging @bisousforleo and encouraging others to follow suit. It doesn’t matter how many followers you have – your kiss can literally change the world! To date, celebrities such as Gal Gadot, Priyanka Chopra, Laura Dern, Sebastian Stan, Isla Fisher, Eva Longoria, Jamie Lynn Sigler, Ben McKenzie, Julianna Hough, Josh Gad, Andy Cohen and Busy Phillips (the list goes on…!), have all posted their kisses in support.
What is being done medically?
Bisous For Léo and the INADcure Foundation have medical partnerships with the NBIA Research Group at Oregon Health and Science University, Baylor College of Medicine, and The New York Stem Cell Foundation. Supporting this work is essential to progress treatment and cure development. For more medical information, please visit BisousForLeo.org.
How are medical initiatives being funded?
Donations! Everything is in motion thanks to the generosity of supporters. There is currently no governmental support.