Get Involved

We can’t do this work alone and need volunteers to build and sustain this organization!   We would love to have you on our team. Can you spare a couple hours per week?  Can you blog or help us raise awareness on social media?  Do you want to create an event that can raise funds? Call us, write us, or e-mail us.  We’d love to have your help in finding a cure!!

CONTACT US

Thank you for visiting us! For questions/comments, please contact us via email at:  admin@huntersyndromefoundation.org or give us a call at 240-375-9629.

One thought on “Get Involved

    Donnye said:
    July 4, 2014 at 4:51 am

    My son, Dax, was one of the earliest ages diagnosed with Hunter’s, as far as we were told then. He was 9 months old at the time, in 1973. We moved to Houston from California for experimental therapy. We did white cell infusions with donations from my husband for a number of years, me spending a month every 6 months in the hospital with him, while we had to send my daughter to grandparents for care. Many tests were conducted in the the first week and then repeated after the next 2 weeks. My husband would come in for the middle 2 weeks to donate his blood, but would then have to return to work. Eventually, we had to stop because, to the best of my recollection, my husband’s white cell count wouldn’t recover quickly enough.

    My son’s disease progressed as you would imagine. But, he lived an amazing life. I wanted to say productive, but that doesn’t capture it. He inspired! He, without our knowledge, applied to be an exchange student to England in college. How could we say no? Everyone who knew him loved him and his sister the best of all. She suffered from separation from family for 2 months each year as a very young child and to this day only remembers her brother with much love and affection. She proudly named her first born son after her brother.

    We lost him in 2001, but he still lives in all of us who were blessed with his presence.

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