I am Yusuph Choudhury the
brother of Eesa Choudhury, he was diagnosed with PACS1, a rare
genetic condition, 2 years ago, at that time only 70 in the world
had been officially diagnosed with it.
200 MILLION CHILDREN WORLD-WIDE SUFFER FROM A RARE DISEASE. ONLY 5% OF THESE HAVE ANY KIND OF TREATMENTS. THESE COULD BE ANYBODY'S FAMILY
- PACS1 Syndrome is considered a rare disease
- Children with PACS1 syndrome have significant intellectual disability, severe speech delays
- Most affected children achieve very limited speech in their lifetime, significant motor delays and epilepsy
- Will require life-long care in the most basic areas of life (such as feeding and safety)
With the availability of genetic testing improving significantly, more and more families are receiving a rare disease diagnosis. At some point, ALL of us will know someone we care about, who is diagnosed with a rare disease;
For this reason I have made a commitment, to help raise money on behalf of my little bro and the PACS1 foundation, stretching myself to my utmost limits , by running a half marathon and leading one of the UK'S youngest crew ever through a 24 hour sail.
Please see the tabs to the right for more info on these events!
THIS IS A CAUSE THAT AFFECTS ALL OF US
The PACS1 Syndrome Research Foundation funds cutting-edge scientific research towards finding a cure for PACS1 Syndrome.
PACS1 SYNDROME HAS A MUCH HIGHER POSSIBILITY FOR A CURE BECAUSE ALL OF THE CHILDREN WITH THE DISEASE HAVE THE EXACT SAME MUTATION MAKING IT A “RARE” UNICORN.
The current science is telling us we should be very hopeful about finding a cure.
The foundation is employing a multi-pronged approach by supporting cutting edge innovative scientific research towards finding a cure; we have narrowed it down to four proposals in the fields of mouse models, chemical drug screens, c-elegans models and structural biology, which will together lead us towards a treatment that will block the effect of the toxic mutation and therefore treat PACS1 Syndrome.
WHAT IS STOPPING US FROM REACHING OUR GOALS EVEN THOUGH THE SCIENCE IS PROMISING?
Rare disease funding is in its very initial stages and typical funding channels via NIH and pharmaceutical companies are not yet established. Without support from the PACS1 foundation, any research towards a cure for PACS1 Syndrome WILL be relegated to the sidelines.
The field of genetics has evolved significantly in the last decade, the science is there. The only thing standing in the way of a cure is funding.
Our incredible group of PACS1 caregivers has an unlimited supply of hope, love and fortitude; we have used our resources for initial funding; however to continue this extremely promising research we need to raise $175,000 to fund further studies on the disease, namely the four areas named above; which are crucial to advance treatment from lab to clinic.
FINDING TREATMENTS FOR A DISEASE LIKE PACS1 WILL HAVE A CASCADING EFFECT; INCREASED PRESS, ADVOCACY AND FUNDING TOWARDS CURES FOR MANY OTHER RARE DISEASES; LESS PARENTS WAITING AROUND FOR A MIRACLE TO HAPPEN.
WE ASK FOR YOUR HELP TODAY TO BECOME A PART OF THIS INCREDIBLE OPPORTUNITY THAT CAN IMPACT A LARGE GROUP OF CHILDREN. HOW CAN YOU HELP?
Every donation counts no matter how small.
Please share our fundrazr page : https://fundrazr.com/EesaStory
PACS1 Socials:
Facebook : https://www.facebook.com/pacs1research
Instagram : https://www.instagram.com/pacs1.research/
Twitter : https://twitter.com/pacs1foundation
Website: www.pacs1foundation.org
Campaigns
24 Hour Sail
During summer this year I will be leading one of the UK'S youngest crew through a 24 hour sail challenge, a sport I am extremely passionate about, and something that is new, out of the ordinary and tough, very tough. It will be on a one of Hertfordshire's beautiful lakes sometime in June. Stay tuned!
Meet the sail crew:
Yusuph Choudhury
Sailing is one of my best sports, I have been doing it for the last 7 years and I am a qualified sailing instructor, and so the first big event that I will be attempting this year will be becoming one of the UK'S youngest crews undergoing a 24 hour non stop sail, I will be aided by crew members whom have the same passion and flare for the sport as me.
Turning down a challenge like this would just be too hard, over the course of the 24 hours me and the crew will have to undergo many challenges , including sleeping and eating arrangements, dealing with extreme weather conditions and handling the boat in a professional manner whilst carrying out any repairs or fixes.
Testing my body out to its limits is what I love doing and raising money for one of the world's best and most needy charities, that is so close to home for me is something I feel honoured to be doing, I am sure I am going to enjoy every single minute of it!
Half Marathon
The second event that I will be attempting this year will be running a half marathon, the furthest distance I have ever aimed to do, stretching my body to the limits of endurance. I will be aided by 1 other teammate.
Meet the half marathon team:
Yusuph Choudhury
Running is one of my great passions and I am always striving to perfect, this cause means an awful lot to me and I could never turn down a challenge such as this, I am ready to take on the beast!
Testing my body out to its limits and raising money for one of the world's best and most needy charities, that is so close to home for me is something I feel honoured to be doing,
