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Join us in a fun-filled dinner & concert with delicious bites, drinks, live music, dancing, silent auction, and Gopro raffle to benefit Project Alive.
The funds provided by this event will help fund the clinical trial at Nationwide Children's Hospital which has high hopes of curing Noah and his friends from Mucopolysaccharidosis II (MPS 2).
Sponsor packages are available!
Silver Sponsorship ($250) - includes 2 complementary tickets and event recognition on printed material.
Gold Sponsorship ($500) - includes 4 complementary tickets, recognition at the event, company logo and name on printed material.
Platinum Sponsorship ($1000) - includes 4 complementary tickets for the VIP table, company logo on a banner, recognition at the event, company logo and name on printed material.
Purchase of sponsorship packages can be mailed by check or through Eventbrite. E-mail aywon.nguyen@gmail.com for details.
Look forward in seeing you there!
This event can also be found on Facebook:
FAQs
Are there ID or minimum age requirements to enter the event?
All ages are welcome, however, alcoholic beverages consumed by 21+ only
What are my transportation/parking options for getting to and from the event?
There is plenty of parking. Please, drink responsibly and take Uber/Lyft if needed.
How can I contact the organizer with any questions?
Email aywon.nguyen@gmail.com
What's the refund policy?
Tickets are nonrefundable.
What's the dress code?
Business casual.
What is Project Alive?
Project Alive is a 501(c)(3) nonprofit corporation with a tax ID 46-4617970 with a mission to cure Hunter Syndrome / Mucopolysaccharidosis II through research and advocacy.
Hunter Syndrome is a rare and fatal lysosomal storage disease affecting 1 in 100,000 boys around the world. Children like Noah cannot produce a certain enzyme used to break down cellular waste. The accumulation of this waste over time leads to progressive damage throughout their little bodies. Boys with Hunter Syndrome are often born normally and live happily undetected until physical and neurological problems arise between 2 to 4 years old. These boys then begin to regress physically and mentally. Some may describe it as childhood Alzheimer’s disease. Most gradually lose the ability to walk, to talk, to eat, and ultimately the ability to live. We would be lucky to have Noah live through his teens. But there is hope. Watch the 2 min video about Hunter Syndrome & Gene Therapy.
We are the Nguyen family from Alameda, CA. Our 3 year-old son Noah was recently diagnosed with a fatal disease called Mucopolysaccharidosis II (MPS 2), also known as Hunter Syndrome.
The world leading researchers at Nationwide Children’s Hospital in Ohio have the plan to develop the potential cure for Hunter Syndrome through gene therapy. It is a one-time delivery of a functioning copy of the defective gene via a harmless vector to allow the body to naturally produce the missing enzyme. This same method has been performed in similar diseases with positive results.
The science and technology is there, but the only thing holding back this potential cure is funding! The doctors need $2.5 million to produce the drug and perform the clinical trial. Being such a rare disease, it is not cost effective for big pharma companies to tackle this disease. Therefore, researchers are relying on parent and community funding to make it happen.
We are collaborating with the 501(c)(3) non-profit organization Project Alive to raise awareness of Hunter Syndrome and fund towards a cure! Watch a 2 minute video about this at www.projectalive.org. A 6-minute documentary about Noah’s story was also just released as part of a docs-series highlighting 5 families across the nation fighting this disease.
The goal for our family is to raise $50,000. All money raised will go towards gene therapy research that our Hunter Syndrome community has been funding for several years now. We are $2.5 million from making this potential “cure” a reality for our boys.
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