About Jain foundation inc
Jain Foundation Inc: A Beacon of Hope for Dysferlinopathy Patients
The Jain Foundation is a non-profit organization that has been working tirelessly to find a cure for dysferlinopathy, also known as LGMD2B, LGMDR2, Miyoshi Myopathy 1. This rare genetic disorder affects the muscles and causes progressive muscle weakness and wasting. The condition is caused by mutations in the DYSF gene, which codes for the protein dysferlin.
The Jain Foundation was founded in 2005 by Plavi Mittal Jain and her husband Ajay Jain after their son was diagnosed with dysferlinopathy. They were determined to find a cure for their son's condition and help others who were suffering from this debilitating disease.
Since its inception, the Jain Foundation has made significant progress in understanding dysferlinopathy and developing potential treatments. The foundation has established collaborations with leading researchers around the world to advance research on this rare disease.
One of the key initiatives of the Jain Foundation is its Dysferlin Registry, which collects clinical data from patients with dysferlinopathies worldwide. This registry helps researchers better understand the natural history of these diseases and identify potential biomarkers that can be used to monitor disease progression or response to treatment.
In addition to its research efforts, the Jain Foundation also provides support services for patients with dysferlinopathies and their families. These services include educational resources about these diseases, financial assistance programs for medical expenses not covered by insurance, and advocacy efforts aimed at raising awareness about these rare disorders.
The foundation's work has garnered recognition from various organizations such as National Institutes of Health (NIH), Muscular Dystrophy Association (MDA), CureDuchenne Ventures LLC., etc., who have provided funding support towards advancing research on Dysfelinopathies.
In conclusion, The Jain Foundation Inc is an organization that offers hope to those affected by Dysfelinopathies. The foundation's tireless efforts in advancing research, providing support services, and raising awareness about these rare diseases have made a significant impact on the lives of patients and their families. With continued support from donors, researchers, and the community at large, the Jain Foundation is poised to make even greater strides towards finding a cure for dysferlinopathy.