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Charities We Love is a monthly series featuring inspirational charities from around the world. At We Are Travel Girls we care about giving back and hope this series will help our readers learn about charities and non-profit organizations that are doing incredible work. This month we are excited to feature Bisous For Léo, which is a non-profit organization dedicated to helping everyone who is affected by Infantile Neuroaxonal Dystrophy.
Bisous For Léo has no set location as the disease operates without borders, race, or religion, but it aims to help everyone who is affected by Infantile Neuroaxonal Dystrophy (INAD). What started with one boy, Léo, has quickly expanded with global intentions. Please help us Kiss INAD goodbye.
Born April 26, 2016 to a Parisian father, Antoine, and an American mother, Deborah, Léo developed typically for his age. He hit his developmental milestones – crawling, cruising, walking, talking and then some! All seemed “normal” until he hit 18 months when he couldn’t take more than 5 steps without falling. Léo’s efforts were endless. No matter how many times he fell, he would get right back up and try again. Bruised physically and emotionally, Léo’s journey was just beginning.
Léo’s parents put him in various physical therapies to help offset his regression but they didn’t work. When one of the therapists confided that nothing she was doing was working, they turned to a geneticist who revealed the devastating diagnosis – Infantile Neuroaxonal Dystrophy. They were told that there was no treatment or cure, but admittedly had never heard of such a diagnosis before. The doctors told them nothing further, other than they were sorry.
Often referred to as Parkinson’s mixed with Alzheimer’s for kids, INAD is an extremely rare, inherited degenerative disorder of the nervous system. INAD starts early in life and progresses rapidly. It usually develops between 6 months and 3 years of age. Children 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.
INAD is considered a neurodegenerative disease. Neurodegenerative diseases affect millions of people worldwide. Alzheimer’s disease and Parkinson’s disease are the most common types, with more than five million Americans living with Alzheimer’s disease, and at least 500,000 Americans living with Parkinson’s disease. Finding a cure for the infant forms of the diseases could lead the way to find better treatments and ultimately a cure for the adult versions. Treating patients as early as possible have been shown to be more beneficial, of course, than after they have lost acquired skills. This is why working quickly to find the cure is key.
There have been numerous studies that address the link between INAD (PLA2G6 mutation) and Alzheimer’s Disease, Parkinson’s Disease and Lewy Bodies Disease: “Eighty percent of patients with INAD had mutations in PLA2G6.”
“We observed Lewy bodies and neurofibrillary tangles in association with PLA2G6 mutations.”
“PLA2G6 mutations are associated with nearly all cases of classic infantile neuroaxonal dystrophy. The neuropathologic changes that are caused by defective phospholipase A2 suggest shared pathogenesis with both Parkinson and Alzheimer diseases”.
Léo no longer walks or talks and he is regressing rapidly. Therefore, it’s hard to travel with him and the jet lag really affects him. Often after a long trip or being sick, Léo regresses. Despite Léo’s devastating condition he is always smiling and happy. He doesn’t give up and neither do his parents in their search for saving their son’s life.
In November 2018, 6 months after Léo was diagnosed, he was enrolled as the first INAD patient in the very first clinical trial in Morristown, New Jersey. There are currently no other known treatments. This is Léo’s only chance at hopefully stopping or, at the very least, slowing down the progression of the disease until a cure is available. Gene Therapy, which has cured other rare diseases, would be the only way to possibly save Léo’s life. Léo’s parents are hoping that trials will start before the end of the year because Léo doesn’t have a lot of time.
Perhaps the most frustrating part of Léo’s diagnosis is the fact that you can test for INAD, and you just need to know enough to ask for the test as it’s currently not part of the regular pregnancy panels. Léo’s parents didn’t know. Furthermore, both parents need to have the recessive/mutilated gene otherwise known as an autosomal recessive disorder. To have an autosomal recessive disorder, you inherit two mutated genes, one from each parent. 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 and a 25% chance that the child will not have INAD or be a carrier. The only way to know if you’re a carrier? To get tested!
HELP US KISS INAD GOODBYE
We need your help. Awareness is key. In September 2018, Bisous For Léo launched an Instagram account @BisousForLeo encouraging its followers to help kiss INAD goodbye, not just for Léo but for all children affected by the disease. People from all around the world have been posting their kisses (or Bisous as they say in French) and tagging Bisous For Léo. Sebastian Stan, Zoe Saldana, Eva Longoria and so many others have all posted in solidarity with Léo. We’d love for you to post your kisses too! Here’s some inspiration, should you need it.
We need an initial 500k to fund Dr Paul T. Kotzbauer’s research and development in gene therapy (the cure). The professor in the department of neurology at Washington University School of Medicine in Saint Louis is focused on understanding disease mechanisms and developing improved diagnostic and therapeutic approaches in Parkinson’s disease and in the hereditary neurological disorder NBIA – Neurodegeneration with Brain Iron Accumulation, under which INAD falls. With his help and with every single donation made to Bisous For Léo, we can advance our mission at hand and kiss INAD goodbye.
Dr Dennis Gross Skincare is now a proud partner and supporter of Bisous for Leo. The brand made a generous donation and will be releasing limited edition sleeve packaging of the Hyaluronic Marine Collagen Lip Cushion to raise awareness and support for the foundation. The packaging features a lion wearing blue glasses, just like Léo’s, alongside the charity’s logo, encouraging people to send Leo kisses by posting on social media to raise funding for treatment and a cure. The sleeves will be available in time for Rare Disease Day (on February 28th) in stores at Sephora.
LÉO and the entire INAD community thank you tremendously for your support!
Do you know of an inspirational charity or non-profit organization? We’d love to hear your thoughts in the comments below! And if you’d like a charity to be considered for this series please submit their story via our Charities Submission Page.
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