iCAN for iNAD
About twenty-one families in the world share the Infantile Neuroaxonal Dystrophy (iNAD) diagnosis. The link between iNAD and Parkinson’s proves that if we can cure one, we can cure both! This inspiring fundraiser, iCAN for iNAD, is presented by a certified 501c3 founded by one of the 21 iNAD families, Ainsley’s Angels. Working in concert with Washington University in St. Louis and Dr. Paul T. Kotzbauer, MD, PhD, Associate Professor, Division of Adult Neurology, Department of Neurology, gifts from Ainsley's Angels generated from this page will be directed to the “Infantile Neuroaxonal Dystrophy (INAD) Research” fund.
The goal of the INAD research project in the Kotzbauer lab is to develop treatments for impaired PLA2G6 enzyme function, the underlying cause of Infantile Neuroaxonal Dystrophy (INAD). The PLA2G6 gene encodes an enzyme that catalyzes the hydrolysis of phospholipids and lysophospholipids to produce free fatty acids. Gene mutations that cause INAD interfere with the ability of the PLA2G6 enzyme to function properly. The lab is developing approaches to screen chemical compounds for their ability to either improve the function of the PLA2G6 enzyme or to stimulate other enzymes to compensate for impaired PLA2G6 function. The goal of the current project is to develop efficient and sensitive screening approaches and then to perform initial screens to identify compounds with the desired properties. The initial screening effort could identify molecules that are suitable for further optimization and testing as therapeutic agents. The research will also provide important information about the best strategies for further screening efforts to develop treatments for INAD.
We will also earmark a portion of funds raised on the page to provide jogging chairs to all types of special needs individuals to experience the thrill of road racing!
iCAN for iNAD means: “Do it because YOU can!”
· Promote a healthy lifestyle – because we can move for those who cannot!
· Contribute to the partnership between Ainsley’s Angels of America and iNAD
· Educate ourselves to know that local community groups world wide hire researchers and find cures for rare illnesses, because it is not profitable for pharmaceutical companies
· Financial Goal of $150,000 – no ice bucket challenge her
In Depth Facts
A five year-old boy named Jake, currently battles iNAD, a rare disease that doctors say is terminal. He lives in Kerr County and his family tirelessly pushes towards a cure. Jake and twenty-one other families in the world share this diagnosis. The link between iNAD and Parkinson’s proves that if we can cure one, we can cure both!
What is the partnership with Ainsley’s Angels of America? Ainsley is another child battling iNAD. Her parents, Marine Corps Major Kim “Rooster” and Lori Rossiter started a non-profit whose mission has three targets: promotes awareness, provides education, and participates as active community members at the local level. In short, they wanted individuals to own a pushchair, so they could experience the outdoors. Ainsley’s Angels has Ambassadors nation-wide, and wants to expand presence in Central Texas, which will serve the Texas Hill Country and San Antonio! STAY TUNED, as we will be bringing a 5K road race to the Hill Country, as well as Lake Charles, LA this summer!
Let’s raise some money for the 21 kids worldwide that have this disease, and help our local special needs community via Ainsley’s Angels.
Medical Definition: To understand the acronym, NBIA stands for Neurodegenerative Brain Iron Accumulation. Nine diseases fall under this umbrella, and one of the rarest diseases is called Infantile Neuroaxonal Dystrophy, also known as INAD (pronounced iNAD). This is the same gene as Parkinson’s with Dystonia. But if the gene expresses at a young age, it’s called INAD rather than Parkinson’s.
Children with this disease are born without delay, and begin showing symptoms between 6-18 months. Physically, children lose their ability to bear weight on their legs, then lose their ability to crawl, sit, and roll over. Eventually, they lose their ability to speak and see. Some children even lost their ability to smile and eat. We must fund a cure.
Enjoy this video to see how one little girl with INAD overcomes obstacles and lives life to the fullest! Also, please click on the links below to learn about the other families and children that have lived or do live daily with INAD.
Contact Event Chair: Kristin Phillips: email@example.com (713) 408-7090