About Us

Facioscapulohumeral muscular dystrophy(FSHD)

FSHD is a rare slow progressing genetic muscle disease that affects both Upper and Lower limbs. it impacts the muscles of an individual's face ,shoulders, upper arms, and lower legs. These muscles weaken and shrink (atrophy) over a period of time. Symptoms usually appear before 20 years of age.

FSHD India Foundation
FSHD India Foundation was registered as a non profit company in September 2021 with an aim to bring all FSHD patients in India on a single platform and share best practises and authentic information related to FSHD.

FSHD India is a part of World FSHD Alliance. Under World FSHD Alliance all organisations around the globe are trying to expedite the race towards an affordable cure by collating knowledge and resources.

Our Team

Manav Goel


Manav is a seasoned professional with over 20 years of experience with multinational companies.
Manav has FSHD and he has seen FSHD-related struggles through his mother (deceased), maternal uncle (deceased) and his sister living with him currently. His Message to the FSHD community is simple, “Do what we Can, Focus on strengths, Collaborate and grow, and Reduce Pain”.

Mohan Sundaram


Mohan Sundaram is the Hon. President and Trustee at The Association of People with Disability, Bangalore. He is CEO &  Founding Director at ARTILAB Foundation, a first-of-its-kind incubator worldwide and ecosystem builder for Assistive and Rehabilitation Healthcare Solutions.
“Despite being a person in a wheelchair, I’ve had access to the best of education and access to everything else the world has to offer. The six years that I’ve spent in the social sector have been far more satisfying and impactful than the 30 years preceding that in the corporate and commercial sectors. The social work space needs a lot of resources both in money and kind to be able to make the lives of the underprivileged and marginalised better.
Would like to do my bit in this collaborative leadership effort. Just effort is insufficient. This space needs a lot of unfettered money, rarely available from other sources except individual giving. This is why I would like to commit 50% of my wealth to charity”


Our Mission

Create a platform where FSHD community members can discuss their best practices, ideas, problems and other issues and work towards FSHD Management and Cure.

Our Vision

Work on advocacy, and provide support to People with FSHD so that they could live a happy, healthy, less painful and inclusive life till the time a cure is not available.
Once a cure is available, work on making it accessible to the FSHD community in terms of reach, budget and medical care.
FSHD Patients
DNA Teasted

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