A parents' initiative, built on the belief that no family should face this alone.
Umeed DMD Foundation was founded by a couple whose son has Duchenne Muscular Dystrophy. Through their journey — from diagnosis to accessing global clinical trials — they discovered how many Indian families are left without guidance, community, or access to the care that science now makes possible.
Umeed is the Hindi word for hope. It is the single feeling this Foundation is built to protect in every family it reaches.
How we support families
We provide six kinds of support — from the moment of diagnosis, and for as long as families need us.
Personal guidance
Helping families understand the diagnosis, the next steps, and how to navigate the Indian healthcare system with confidence.
Financial assistance
Supporting families with the cost of genetic testing, steroids, physiotherapy, and cardiac monitoring.
Physiotherapy access
Connecting families to trained physiotherapists and providing therapy guides in Hindi and regional languages.
Community
Monthly support groups across India — in person and online — where families meet others who truly understand.
Clinical trial information
Sharing information on global clinical trials and advanced treatments with families who wish to explore every option.
Patient registry
Building India's first structured DMD patient registry — so that Indian families can contribute to global DMD research.
Recognising DMD early makes a difference.
Symptoms usually appear between ages 2 and 5. Early diagnosis opens more treatment options. If your son shows any of these signs, speak with a paediatric neurologist as soon as possible.
Frequent falls
Falls more often than peers. Struggles to run, jump, or keep up with other children during play — especially noticeable from ages 2 to 5.
Difficulty rising from the floor
Uses hands to "walk up" their own legs when getting up — known as Gower's sign. One of the most characteristic early indicators of DMD.
Enlarged calf muscles
Calves appear unusually large and firm. This happens as weakened muscle is replaced by fat and connective tissue — giving a misleading appearance of strength.
Walking on tiptoe
Walks on toes rather than with a flat foot due to tightening of the calf muscles — a subtle but consistent early sign that is easy to observe at home.
Difficulty climbing stairs
Requires significant effort or adult support to climb stairs. May grip the railing with both hands or avoid stairs altogether when given a choice.
Delayed walking milestones
Begins walking later than expected, or develops a noticeably unusual gait. Some children walk at a normal age but show other signs by ages 3 to 5.
Every child with Duchenne deserves a fighting chance.
In India, hundreds of thousands of boys are living with Duchenne Muscular Dystrophy. Most of their families receive a diagnosis — and then silence. No guidance. No community. No roadmap. Umeed exists to change that.
  • 1 in 3,500
    boys born with DMD worldwide
  • 3–5 years
    average delay to diagnosis in India
  • 500,000+
    estimated boys affected in India
Voices from the Umeed community
These are the words of real parents — shared with their permission — who reached out to us at different stages of their journey with DMD.
When my son was diagnosed, the doctor handed me a report and said there was no treatment. I went home and cried for three days. Then I found Umeed. Within 48 hours, someone had called me, explained what the report actually meant.
SR
Sunita R.
Lucknow, Uttar Pradesh · Son diagnosed at age 4
Humein lagta tha ki hum akele hain. Koi nahi samjhega. Phir Umeed ke through doosre parents se mili. Pehli baar laga ki koi sach mein samajh raha hai. Ab hum har mahine milte hain aur ek doosre ko sambhaalte hain.
MD
Meena D.
Bhopal, Madhya Pradesh · Son diagnosed at age 6
The genetic test was something we could not afford. Umeed helped us access it. That test result opened the door to a clinical trial abroad that we are now in the process of exploring. I cannot describe what that possibility means to us as parents.
AP
Anand & Priya K.
Bengaluru, Karnataka · Son diagnosed at age 3
I am a pediatric neurologist. I started referring DMD families to Umeed because they provide the kind of support that I simply cannot — the emotional holding, the practical navigation, the community.
RV
Dr. Ramesh V.
Mumbai, Maharashtra · Pediatric Neurologist
Ask for a Creatine Kinase (CK) blood test
If you notice any of these signs, a simple, inexpensive CK blood test available at any pathology lab is the right first step. In boys with DMD, CK levels are typically 10–100× higher than normal. It is not painful and requires no specialist referral.
Write to us for guidance
Questions families ask us most
If your question is not answered here, please write to us — we respond to every message personally.

  • My son falls often and has large calves. Should I be worried about DMD?

    These are indeed two of the earliest and most common signs of Duchenne Muscular Dystrophy. We would encourage you not to panic, but also not to wait. Ask your pediatrician for a blood test to measure Creatine Kinase (CK) levels. This is a simple, inexpensive test available at any pathology lab. Elevated CK levels would be a signal to consult a pediatric neurologist. Please write to us if you are unsure how to proceed — we can help you find the right specialist in your city.

  • My son has just been diagnosed. What should I do first?

    Please take a breath. A diagnosis of DMD is not the end of the road — it is the beginning of a new and very active one. The first three steps are: (1) begin a conversation with a pediatric neurologist experienced in DMD, (2) get a genetic test done to confirm the specific mutation, and (3) reach out to us. We will walk with you through everything that follows. Many families tell us that the weeks after diagnosis were the hardest — and that having someone to speak with made an enormous difference.

  • Why is the genetic test important if the diagnosis is already confirmed by CK levels?

    The genetic test identifies the specific mutation in the dystrophin gene — whether it is a deletion, duplication, or point mutation, and which exons are affected. This information is critical for two reasons. First, it determines which currently approved treatments your son may be eligible for (some exon-skipping drugs are mutation-specific). Second, it determines eligibility for global clinical trials, which are often the frontier of the most advanced care available. Without a genetic test, many of these doors remain closed.

  • Is there any treatment for DMD? We were told there is nothing that can be done.

    Unfortunately, many families in India are told this — and it is not accurate. While there is currently no complete cure, there is a great deal that can and should be done. Corticosteroids (Deflazacort or Prednisolone) are the standard of care and significantly slow the progression of muscle weakness. Regular physiotherapy preserves mobility. Cardiac medications protect the heart. And at the frontier of care, gene therapies and exon-skipping drugs are now approved in some countries and in advanced clinical trials globally. We have personally helped families access these options. Please write to us if you want to understand what might be relevant for your son.

  • Can girls be affected by DMD?

    DMD almost exclusively affects boys. Girls can carry the faulty dystrophin gene and pass it on to their sons, and a small number of female carriers may experience some muscle weakness or cardiac symptoms — but full DMD as seen in boys is extremely rare in girls. If you are a mother of a son with DMD, there is a significant chance that you are a carrier. Genetic counselling for the family, including sisters and maternal aunts, is often recommended.

  • We live in a small town. Can Umeed still help us?

    Absolutely. Many of the families we support are in smaller cities and rural areas where access to specialist care is very limited. We can guide you to the right specialists through remote consultations, provide physiotherapy guides in Hindi and regional languages, connect you to our online community groups, and support you with the cost of genetic testing and travel for specialist consultations when needed. Distance is not a barrier to reaching us or receiving support from us. Write to us on WhatsApp or email — in Hindi or English — and we will respond.

  • What is a clinical trial and how do I find out if my son is eligible?

    A clinical trial is a research study in which a new treatment — such as a gene therapy or exon-skipping drug — is given to patients in a carefully monitored setting. Many of the most promising DMD treatments in the world are currently being tested in clinical trials. Eligibility depends on your son's age, mutation type, ambulatory status, and other medical factors. We have personal experience navigating this process, including accessing one of the world's most advanced gene therapy trials for our own son. If you are interested in exploring this, please write to us. We will share what we know honestly and help you understand what might be possible.

  • Is Umeed DMD Foundation a registered organisation?

    Umeed DMD Foundation is currently in the process of formal registration as a Section 8 Company under the Companies Act, 2013 — the standard structure for non-profit organisations in India. Our founders have prior experience running a registered NGO for the education of underprivileged children, and bring that governance experience to this Foundation. We are committed to full transparency about our registration status and our use of funds at every stage.