Dillon STAXX Drive for Project Alive
What is Hunter Syndrome?
Project Alive exists to find and fund a cure for Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II). They do this through research and advocacy. Below you will find a video that can be viewed on their Website and Social Media that tells you more about what Hunter Syndrome is.
To learn more about Hunter Syndrome visit: Project Alive
Who is Project Alive?
Project Alive is a powerful voice for children and adults with Hunter Syndrome, bringing together families and advocates with researchers, industry, and regulators. The organization funds promising curative research, assists researchers and industry with designing research studies for our community, and advocates for the most effective and efficient system of clinical research, evaluation, and approval. Through its innovative campaigns and grassroots efforts, Project Alive has made significant advances in public awareness about Hunter Syndrome and its symptoms, the need for early diagnosis, and available treatments and clinical trials.
(Credit to Project Alive - https://projectalive.org/about/)
Who is Dillon?
This is Dillon, he is 11 years old turning 12 this year (2023). He is an outgoing and Happy kid playing outside daily , laughing and singing. His favorite things to do is Sing to Disney movies and shows. He loves his Power Rangers , SpongeBob and Sonic the Hedgehog.
Dillon attends a Special Needs / Behavioral Private School which has helped him out tremendously with his education that public schools could not do, due to lack of resources.
Dillon has a rare genetic disease called MPS2 otherwise known as Hunter Syndrome.
Dillon goes through weekly home Infusions/Treatments that last between 6-8 hours every Sunday since he has been 1 years old. Dillion also does clinical treatments in a study to help get his expensive meds approved by the FDA so Insurance can help cover it and also help the other boys with this rare disease.
At the age of 10, he's been through 9 extensive surgeries and has been put under over 100x for procedures with the clinical studies.
RE Club has partnered with the STAXX family and will support Project Alive moving forward to help with research and other parents in needs with their child.
#POUCHBOIZ & #POUCHGALZ
Each month RE Club will donate 100% of the donated proceeds to Project Alive. To give back to the community RE Club will select a member of the community to be given the title of “#POUCHBOIZ” or “#POUCHGALZ”. These statuses are earned in the club through the act of "doing good” and being recognized for it. Click here to donate.