It’s unbelievable, but true! Rs. 10,000,000 per year for the treatment of a disease called Pompe. Listed as one of the top 5 costliest diseases on the planet, this rare disease is affecting some 5,000 people in the world.
Battling Pompe is taxing in mind, body, spirit as well as finances. I’m sure you know how it is to be sick. Medical expenses pile up. What’s more for people who suffer from Pompe – it is a day to day battle. A lot of patients require special medical equipment such as ventilator machines, specialized electric wheelchairs, wheelchairs, medical aide, etc.
How many parents do you think can afford such cost? Of course, there are a few lucky people around the world who can afford the medical needs that come with dealing with Pompe. But a lot of people here in India aren’t so lucky. In a country wherein majority of the population live below the poverty line, there are a lot of people, especially children who need help. Having a rare disease makes that problem all the more difficult. Started by the parents of a little girl who is fighting against this orphan disease, the Pompe foundation will try to help ease the burden. I know that this might be a lofty goal but everything starts with a dream and a lot of hope that we can make a difference.
Apart from the fundraising and arguably the more important part of the ‘Be one in a million’ campaign is creating awareness for Pompe Disease. The more people are made aware of it, the more people can help the patients. Just the same for Cancer and Aids patients. The main difference is that both these disease affect a lot more people than Pompe. Hence the more people know about them. Still, even if Pompe affects a lesser number of people it doesn’t mean it’s less important. Who knows maybe someone out there knows how to help Pompe patients better. So please help me, get this message across. That’s a great service already.
Finally, from the bottom of my heart, my deepest thanks. In reading this alone you’ve already helped. You’re now aware of the ‘Be one in a million’ Campaign. You may or may not be ready yet to help but at least you know about it. You can always come back when you feel you’re ready.
Thanks a million!
Prasanna Kumar B Shirol
Donate Now: Your Donation shall be used as below:
- 80% of the donation used for
- Supporting a Pompe patient or family and other Rare Disease patients
- Funding the Gene Therapy Research
- 10% of the amount shall be used towards Awareness programmes
- 10% donation money shall be used as administrative Cost for the foundation.
For Donation- Bank Account details
1) For NEFT, RTGS or ECS
Name of the BankIDBI Bank
A/c Name – Pompe Foundation
A/c No – 868104000012193
Branch: Shashwathi Arcade, No 7,
Attimabbe Road, Banashankari 3rd Stage,
2) Cheques and DD’s may be couriered to the Below address
Prasanna Kumar B Shirol
Flat No 114, Swarna Silicon Minos,
Basavanna Nagar, Hoodi
Mobile No: +91 9980133300 or +91 9343403400
For income tax exemption write to us and we can guide yo to donate to our partner Organization
THANK YOU FOR YOUR SUPPORT