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Project Alive: Works with Hunter Syndrome Foundation

Lie Thores ~ 10/19/2024
DJ Dominic gets ready to spin The Wonderfall Family Festival Will illustrate that unity . REDONDO BEACH , CA , UNITED STATES , October 15 , 2024 /EINPresswire.com/ -- The Hunter Syndrome community is comprised of numerous local organizations that have come together to battle this rare genetic disorder that

DJ Dominic gets ready to spin

The Wonderfall Family Festival Will illustrate that unity. REDONDO BEACH, CA, UNITED STATES, October 15, 2024 /EINPresswire.com/ -- The Hunter Syndrome community is comprised of numerous local organizations that have come together to battle this rare genetic disorder that affects young males. Rather than compete for funds, these organizations are unified in finding a cure.

Project Alive in conjunction with local Prosper, Texas organization, the Hunter Syndrome Foundation is excited to announce the Wonderfall Family Festival. This vibrant fall event set to take place on October 26, 2024, at RoughRiders Stadium in Frisco, Texas. The Hunter Syndrome Foundation is well known locally for their event, Dancing with Dominic.

Dominic is 14 years old. Like most teens, he enjoys playing on his iPad and playing video games. He also loves listening to music and dancing. At 22 months old, he was diagnosed with Hunter syndrome or Mucopolysaccharidosis Type II (MPS II). This rare condition affects 1 in 150,000 males and there are only about 2,500 patients world-wide. THERE IS CURRENTLY NO CURE.

Organizations such as Project Alive, and the Hunter Syndrome Foundation have found each other. They share information and support each other in every way imaginable.

Having Hunter syndrome means the child is missing a single enzyme which is responsible for breaking down and recycling long sugar chains called GAGs within my cells. Without this enzyme, GAGs are building up in cells throughout my body, causing progressive damage. Hunter syndrome can cause significant delays in all areas of development.

Although there is no cure, there are multiple clinical trials taking place today that contribute to the expectation that a cure is within reach.

For Dominic’s 4th birthday, his mother gave him a special and unique gift. She started the Hunter Syndrome Foundation, a 501(c)3 non-profit corporation with a mission to fund potential therapies that will ultimately find a cure for this disorder. In 2022, Dominic’s mom also joined the Board of Directors for Project Alive.

You can learn more and buy tickets at https://projectalive.org/conferences/2024-wonderfall-family-festival

The WonderFall Family Festival will be a family friendly fall festival open to the public. It will feature carnival games, bounce houses, train rides, trunk or treat, bingo, raffles, silent auction, a live band, dance performances from local dance groups, and more. The group will host a sensory hour from 4:00-5:00 pm.

Project Alive is a philanthropic organization dedicated to extending the lives of young boys afflicted with Hunter Syndrome. They are making a significant impact in the fight against this challenging genetic disorder. The organization’s name embodies its mission perfectly, as it works tirelessly to improve the lives of those affected by this condition, which often shortens their lifespan.

Hunter Syndrome Foundation is a non-profit corporation with a mission to fund research, support families, and raise awareness of this rare disease. The Foundation is based in Prosper, Texas and was founded in 2013 by parents with children affected by Hunter Syndrome.

Together, we can work towards a future where every child with Hunter Syndrome has the chance to live a long and healthy life.

You can speak with Project Alive CEO, Kristin McKay and the Hunter Syndrome Foundation’s President, Jeanette Henriquez to tell this important story and promote this worthwhile event.

Contact:
Mike Mena at: 310-913-0625 or [email protected].

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Michael T MenaIleana International+1 3109130625email us here

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October 15, 2024, 19:35 GMT

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Project Alive: Works with Hunter Syndrome Foundation

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