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When a child gets hurt, a typical response might be "kiss it to make it feel better." This method works in most cases; however, for Léo Vauclare it's not so simple. Born in France to a Parisian father and an American mother, the energetic two year old was recently diagnosed with a rare, genetic, neurodegenerative disease called INAD - Infantile Neuroaxonal Dystrophy (https://bit.ly/2uuGdxU), or in simpler terms, "Parkinson's mixed with Alzheimer's, affecting kids."
Léo developed like a typical child well into his first year, but soon after, his parents, Deborah and Antoine, noticed a developmental regression. After much testing, the diagnosis was rendered. Eventually, he 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 his death likely before he's ten years old. While there are currently no known treatments or cures, we would like to change that, not only for Léo but for other children diagnosed with this devastating disease. One of the most common questions we get asked is why it is important to fund such a rare disease and we are ready with a resounding “wow-inducing” answer to this question – further understanding of INAD could in turn help to develop new treatments and ultimately a cure for some forms of Parkinson’s Disease, Alzheimer’s, and Lewy Body Dementia. There have been numerous studies that address the link between INAD (PLA2G6 mutation) and these other neurodegenerative diseases. And these neurodegenerative diseases impact 50 plus million people around the world!
Dr. Paul T. Kotzbauer, MD, PhD, and professor in the department of neurology at Washington University School of Medicine, is one of the lead doctors helping us fight the good fight. His current research 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. As explained by Dr. Kotzbauer, "I have been able to identify a definitive link between Parkinson's disease and INAD. Accumulation of the alpha-synuclein protein, a defining feature of Parkinson's disease, also occurs in INAD, affecting the same regions of the central nervous system. Thus, further understanding of these two neurodegenerative disorders will help to develop new treatments and ultimately a cure.” As affirmed by J. Paul Taylor, M.D., Ph.D., Faculty Member, Chair of Cell and Molecular Biology Department at St. Jude Children’s Research Hospital and Howard Hughes Medical Institute Investigator, “Mutations in PLA2G6 have been associated with other brain disorders, such as Parkinson’s and Alzheimer’s diseases. Research shows that some INAD patients present Lewy bodies and neurofibrillary tangles in the brain, which suggests a shared pathogenesis. Supporting science aimed towards a better understanding of INAD and PLA2G6 gene mutations could also benefit the other brain diseases in which PLA2G6 has been implicated.” To learn more click here!
Bisous For Léo raises funds to benefit the INADcure Foundation (www.inadcure.org). The INADcure Foundation is the only U.S.-based nonprofit dedicated to the INAD community. It was formed to fund scientific research for treatments and a cure for INAD and other forms of PLA2G6-related neurodegeneration (PLAN).
The INADcure Foundation is committed to bringing breakthrough treatments, and one day a cure, to all children living with INAD. Current research initiatives include:
1) Gene Therapy Research in partnership with Washington University in St. Louis
2) Compound Screening in partnership with Baylor College of Medicine
3) INAD BioBank in partnership with the New York Stem Cell Foundation
4) Gene Editing/Cell Therapy Initiative in partnership with the New York Stem Cell Foundation
5) PLANready Natural History Study in partnership with Oregon Health and Science University
the money raised, our kisses, or bisous as they say in French, will help us kiss INAD goodbye 💋
BISOUS FOR LEO BOOK 💋
To purchase the Bisous For Léo book, please click here:
For kiss inspiration, click here: https://bit.ly/2tjSIzC
100% of the proceeds benefit the cause 💋
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