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DJsPopPop

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1 reviews

Review for FRAXA Research Foundation, Newburyport, MA, USA

Rating: 5 stars  

As I watch my grandson DJ play I am continuously reminded that the children are the blessings of this world we live in. DJ came into this world in December 2011 and we were so excited to welcome this little man (I know, who calls a baby a little man, right) into our family and into our hearts. It was 6 - 9 short months later that we started recognizing some different behaviors with DJ. It couldn't be Fragile X Syndrome as DJ's mom was already tested and the test came back negative. So what was going on with this precious baby? In early December 2012 DJs mom was at her annual checkup where she asked the health care person to review the Fragile X test in her records. The health care professional said there was no test in her records. While DJ's mom didn't understand what happened and why there wasn't a test, she did know that she had to be tested right away. The tests came in and the results were somewhat expected to our daughter-in-law. She was a carrier. Time for DJ to get tested and the results came back full mutation. As we celebrated this baby boy's first birthday we came together as a family with a goal to better understand Fragile X Syndrome. We established goals to better understand Fragile X Syndrome, to raise awareness, and to do what we could to help find a cure. There are a couple of great Fragile X charities that we came upon, but FRAXA Research Foundation seemed to be a charity that our family could align with. To us they demonstrated passion in helping to find a cure for Fragile X Syndrome and to help raise awareness. Once we introduced ourselves and really met the people at FRAXA we were totally amazed. They are kind and giving and caring people. They are great people with a hope for the future. We are working with FRAXA to put together a team of runners for the 2014 Marine Corps Marathon and it has just been a great experience. When we need something from FRAXA they are there to immediately respond. They are simply amazing! And as for DJ, he is simply amazing as well! We love that little man like there is no tomorrow!

If I had to make changes to this organization, I would...

The only thing I would want to do is help them grow. If I only had that knowledge and experience...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Role:  Volunteer