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No thanksThanks to our generous sponsor who has matched approx. $56,000 in donations. All matching contributions have been claimed but we still need your help
Our Generous Sponsor has already provided $56,373 in matching contributions. All matching contributions have been claimed but we still need your help.
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200 MILLION CHILDREN WORLD-WIDE SUFFER FROM A RARE DISEASE. ONLY 5% OF THESE HAVE ANY KIND OF TREATMENTS. THESE COULD BE ANYBODY'S CHILDREN
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, epilepsy, and 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;
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.
100% of donation proceeds will be used to directly fund the research projects. All minimal administrative expenses are covered by the PACS1 Families. The PACS1 Syndrome Research Foundation is an IRS approved 501(C)(3) Foundation and donations are tax-deductible. The foundation's TAX ID is 82-6460046.
Please share our fundrazr page : https://fundrazr.com/curepacs1?ref=ab_98mIJ2
Follow us on Facebook : https://www.facebook.com/pacs1research
Follow us on Instagram : https://www.instagram.com/pacs1.research/
Follow us on Twitter : https://twitter.com/pacs1foundation
Visit our website and share it WIDELY : www.pacs1foundation.org
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