The INADcure Foundation is the only U.S. based nonprofit dedicated to the INAD community. Founded in 2016, it was formed to fund scientific research for treatments and a cure for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN).
INAD is an extremely rare, inherited degenerative disorder of the nervous system. It starts early in life and progresses rapidly. It usually develops between 6 months and 3 years of age. The first signs are often delays in developing skills, such as walking and talking. Often referred to as Parkinson’s combined with Alzheimer’s for kids, 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 the age of 10. Currently there is no cure for INAD.
The Foundation works in collaboration with scientific advisors to identify the most promising INAD research projects for funding. In addition, the Foundation actively forges partnerships with academic institutions, biotechnology and pharmaceutical companies to accelerate the development of new and pending treatments.
The Foundation’s mission is to support the development of treatments, including a cure, for INAD. Its vision is to live in a world where INAD is effectively diagnosed, treated, and cured – so that not one more child has to suffer from this devastating disease.
What They Do
The Foundation’s primary focus is to fund research through its Grants Making Program.
They work in collaboration with a scientific advisory board to identify the most promising INAD research projects for funding. It is their hope by offering financial support to these efforts, that they will be able to increase the number of scientists working on INAD and therefore accelerate the discovery of both treatments and a cure for this disease. Funding is open to researchers, clinicians, and postdoctoral fellows based in the US and worldwide. Those working in academia and biotechnology companies as also eligible to apply for funding.
The INADcure Foundation also supports families by facilitating communication, sharing up-to-date disease information and managing a private forum in which information, ideas, advice and support is able to be safely shared between families.
Their network of families and advocates are becoming a powerful voice, as they raise awareness for INAD within the community (including the medical profession) and advocate for improved outcomes for their children. And like other patient organizations and rare disease advocacy groups, they are already making an impact on drug development and clinical trials, serving a resource for both education and connection.
How You Can Donate
Our $1,000 went towards the INADcure Foundation’s Research Grants Program. Many people don’t realize that there is very little money dedicated towards rare disease research. That is why the majority of funds raised support the INADcure Foundation go directly towards research via their grant making program – in hopes of accelerating research towards treatments and ultimately a cure for INAD.
Every dollar donated will make a difference. There is hope as there is promising research studies currently under way that aim to treat and possibly even cure INAD. We appreciate everyone’s help in this fight for a cure!