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33 Reviews
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July 3, 2014

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July 3, 2014

FRAXA is a truly remarkable organization with only one goal in their mission statement: to find a cure for the genetic disorder, Fragile X. Presented with a zero public recognition factor on day one, the dedicated founders and staff at FRAXA have moved the Fragile X conversation forward. America can boast a National Fragile X Recognition Day due to this group. As the parent of a Fragile X young man, I know that my contribution to FRAXA makes a difference. Why? Because contributions fund research grants, not administrative costs. Medical, genetic, and pharmaceutical researchers around the world are working toward a cure. My son will be 26 years old in 2 days. Go FRAXA! You are doing the impossible, and everyday we thank you for the cure that is coming.

Ways to make it better...

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

Most efficient non-profit I have ever seen. Don't change.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2014

July 1, 2014

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July 1, 2014

Medical research has made tremendous progress in many areas. But as the brain is by far the most complex organ known to man, progress in brain research has until recently been limited. With FRAXA we have an opportunity to change this. With very little resources, FRAXA follows an extremely effective approach to promote and fund research to find a cure for Fragile X Syndrome. This has the potential to be a game changer for people affected by Fragile X as well as many other brain conditions, because many share a similar biological cause. Solving Fragile X lies within reach, and will be a welcome medical breakthrough resulting in many discoveries benefiting millions of people. FRAXA will make our world a better place.

Ways to make it better...

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

Focus on improving revenue from donations, allowing the organization to speed up research and increase the likelihood of finding a cure to fragile X Syndrome rather sooner than later.

More feedback...

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?

Life-changing

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

June 30, 2014

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June 30, 2014

As a FRAXA staff member for the past year, I have seen first hand what a wonderful organization this truly is. Katie and Mike, both the founders of FRAXA and parents of a young man with Fragile X, have shown extraordinary compassion and gratitude towards the families and donors affiliated with FRAXA. We work diligently alongside our donors, and consider them to be members of our family here at FRAXA. I'm proud to be a member of the FRAXA team, and am looking forward to our continued progress!

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

June 30, 2014

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1 previous review
September 7, 2013

There is no organization doing more independently towards researching a cure for Fragile-X Syndrome than FRAXA. Knowing that 96% of my donations go directly towards research is amazing. more

June 30, 2014

FRAXA continues to be the one and only organization I see moving the ball towards a cure for Fragile X Syndrome. Please join FRAXA in their quest for a cure!

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

September 7, 2013
1 person found this review helpful

There is no organization doing more independently towards researching a cure for Fragile-X Syndrome than FRAXA. Knowing that 96% of my donations go directly towards research is amazing.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

June 30, 2014

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June 30, 2014

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!

Ways to make it better...

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...

More feedback...

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

June 28, 2014

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June 28, 2014

Fraxa never ceases to amaze me. It is a highly professional organization that maintains a personal, human touch.

Ways to make it better...

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

Clone Katie

More feedback...

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

June 28, 2014

more


1 previous review
September 5, 2013

FRAXA Research Foundation really goes the extra mile to educate the public about Fragile X Syndrome. They have wonderful informational brochures, e-newsletters. more

June 28, 2014

FRAXA Research Foundation is the best! I have learned so much from the foundation.
FRAXA works diligently to raise funds for a cure & educate the public. The founders & volunteers are so dedicated to this great cause.

Ways to make it better...

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

Nothing FRAXA Research is a well oiled machine

More feedback...

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?

Life-changing

Did the organization use your time wisely?

Very Well

When was your last experience with this nonprofit?

2014

September 5, 2013

FRAXA Research Foundation really goes the extra mile to educate the public about Fragile X Syndrome. They have wonderful informational brochures, e-newsletters.

Ways to make it better...

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

The organization is very well run & organized & above all trustworthy

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2007

June 27, 2014
1 person found this review helpful

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June 27, 2014
1 person found this review helpful

Watching the development, progress and accomplishments of this amazing organization has been very inspirational. Their efforts to involve the academic and research communities has been exceptional, bringing much progress. Their founders, parents of a Fragile X child, have accomplished a tremendous amount. Their support of families has meant a great deal to so many.

Ways to make it better...

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

No changes but hope for more funding from any source.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

June 27, 2014
1 person found this review helpful

more

June 27, 2014
1 person found this review helpful

FRAXA Research Foundation is absolutely devoted to its mission, which is to find a cure for Fragile X Syndrome. They don't waste money on administrative costs or education, although they DO educate through their website and research grants. They've gathered the finest minds in genetics and physiology and together they make decisions to fund promising grants from around the world. I truly believe that FRAXA will find a cure for this devastating syndrome in our lifetime, and I will continue to support them - and cheer them on. They are the best hope for families there is!

Ways to make it better...

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

No changes, but I'd like to see more federal funding.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2014

June 27, 2014
1 person found this review helpful

more

June 27, 2014
1 person found this review helpful

My brother has Fragile X and my parents founded FRAXA in order to find a cure for him and others affected by Fragile X. The work they have done over my lifetime continues to amaze me. The foundation has come so far from being a small operation in the spare bedroom of our house to an amazing foundation that has made so much progress. It gives me hope for my brother and my future children who could also have Fragile X (I'm a carrier). I am so proud to see how much has been done and how much continues to be researched and developed.

Ways to make it better...

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

have more drug companies involved and running trials. There have been some potential treatments that have had limited success but more needs to be done to find something more promising.

More feedback...

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?

Life-changing

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

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