The "PRIMUS Help DMD patients" initiative is a campaign that is being done to by me and my fellow students to raise funds to help young boys from very poor families who are suffering from Duchenne Muscular Dystrophy (DMD).
What is Duchenne Muscular Dystrophy (DMD)?
Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. It starts early in childhood, affects mainly boys and usually ends with them not surviving beyond their teens.
What is the life expectancy for a DMD patient?
Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing.
HELP ME RAISE INR 20000 & IMPACT THE LIFE OF ONE BOY SUFFERING FROM DMD FOR A YEAR.
All the funds collected from this initiative will go to the NGO- DART (Dystrophy Annihilation Research Trust) located at Dollars Colony, Bangalore. This NGO works towards finding a cure and treating patients with DMD. Treatment for this in the USA and West runs into lakhs per year. INR 20000 will provide medicines and physiotherapy for underprivileged kids with DMD for one year.
Currently, there is no CURE for this but DART is working towards that too.
The money raised, will be given to DART. You get a tax benefit by funding this campaign. The team at DART will share the details of which patient benefitted from your funding with me. I shall then post an update on this campaign giving you details of the child whose treatment is being funded so that you know where your money has been used.
STORY OF A DMD PATIENT:
Karan comes from a well to do family and has parents who understand what the best course of treatment is. However, the majority of DMD patients come from extremely poor backgrounds and need monetary help to treat their sons. This campaign is about transforming their life by funding their treatment.
The muscle weakness of Muscular Dystrophy often begins in the legs. This makes it difficult for a child to walk normally, and he or she may walk with their feet wide apart to help keep balance. The child may use his or her hands and arms to get up from the floor and assist with standing. There may be frequent falls, a waddling gait, limited range of motion and pain in the calves. By 12 years of age, a child is often completely unable to walk and must use a wheelchair. Over time, muscle weakness gets worse. These include muscles in the neck and arms & chest. This can result in such complications as deformities in development of the bones of the chest and spine and scoliosis. This can lead to serious complications, including difficulty in breathing and pneumonia. Some children may also have mental impairment, cardiac arrhythmias or cardiomyopathy.
ABOUT ME & THIS CAMPAIGN:
Running like the wind, jumping through the air, carefree and unburdened- these are the experiences of a normal child. I find it difficult to fathom life any other way, and yet, there are many kids who suffer from Duchenne Muscular Dystrophy (DMD), a fatal disease that is a bane to not only their childhood, but also continues to haunt them for the rest of their lives, greatly shortened by the ailment. Gradually degenerating the muscles in the body, the illness can render once joyful children, often as young as three, dull and lifeless, unable to comprehend the grave implications of the disease that has affected them. The fact that we can do something to ameliorate even a few of these lives is reason enough for one to take action.
All that is required from us are funds, aid that can lighten the burden on the families of those who suffer from DMD. Together, I am sure we can make a significant change for the better in the lives of those who are in dire need of our assistance.
THE PARTNER NGO:
The funds from this campaign go to DART. They are a Bengaluru based NGO.
All the receipts get tax benefits and will be sent to you directly from DART. They have the necessary 80G certification and also have an FCRA certificate (This means that even funding from foreign sources is accepted).
HOW YOU CAN HELP & HOW FUNDS WILL BE USED
We are raising money to cover the cost of treatment of one child who is suffering from DMD and comes from an underprivileged family for a year. Once the campaign ends, we will get an update from DART telling us about who the beneficiary of the donation is.
For this campaign, the students will get the " details of patients & their family background".
By funding this campaign, you are eligible for tax breaks as DART is a registered NGO and you can avail benefits under section 80G of the IT act. Foreign funding is accepted. If you are an Indian living abroad or a person holding an Indian passport you can EASILY fund this campaign.
Dystrophy Annihilation Research Trust [DART] is the first Research lab in India focusing on Duchenne Muscular Dystrophy (DMD). We are a parent founded and funded organization working towards achieving a realistic treatment option to alleviate and reverse the dystrophy condition at the genetic level thereby enhancing the quality of life of affected children.
DART was founded by RS Anand who has been tirelessly working towards a deeper understanding of DMD since discovering his son was affected by DMD in 2003. With India having more than 5L boys with DMD it was startling that no proper research was being done for the same.
DART was established in 2012 with the idea of providing support to affected children and their families in dealing with muscular dystrophy. Anand is the founder of DART, current President and the driving force behind the organization.
DART IN THE NEWS:
‘DART is a blessing. They gave me confidence when most GPs said there was nothing that could be done. I enjoy the atmosphere at DART. There is a lot of optimism and determination and that gives me hope’
Mala (Parent of a boy who has DMD)
LOCATION OF DART:
The DART office and research division is located at 295, 14th Cross Rd, AGS Layout, Dollars Colony, R.M.V. 2nd Stage, Bengaluru, Karnataka 560094
Will we get to know details of the child who benefitted?
Yes. After the money has been collected it will be transferred by Fueladream to DART. It will take 60-120 days after that to get details of who the beneficiary child was with details of parents, picture etc. Once I get this information from the team at DART, I shall upload this on the UPDATES section of this campaign. You will then get an alert & can read details about the beneficiary.
What are the crowdfunding charges?
Fueladream charges 3% for the payment for the payment gateway and 9% as crowdfunding charges. With GST the total comes to 14.16%. Net off all these fees - you still get to impact the life of a DMD child for an entire year. There is also an initial fee of 3000 INR which is being waived for us.
When do I get the receipts?
It takes a week after the campaign is closed for the monies to be transferred. The receipts will start getting processed about 2 to 3 weeks AFTER the campaign is closed and will be sent to you directly.
How does crowdfunding work?
Crowdfunding in India is a relatively new concept & is growing very quickly.
It’s s concept that allows a large number of funders (like you) to fund an Idea or a cause or event by giving small amounts of money online. Fueladream is a crowdfunding site and platform in India that allows for such a pooling of funds.
You can fund innovations & ideas on FuelADream and be the first to get these products or make them come true. You can also do a good turn by funding charities and causes through crowdfunding. When you fund a charity it’s more like a donation & you get small innovative rewards like a shout-out on an FB page or a thank you email from the beneficiaries.