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July 1, 2014
1 person found this review helpful

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July 1, 2014
1 person found this review helpful

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
1 person found this review helpful

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June 30, 2014
1 person found this review helpful

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
1 person found this review helpful

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June 28, 2014
1 person found this review helpful

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
1 person found this review helpful

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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
1 person found this review helpful

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

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

November 6, 2013
1 person found this review helpful

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November 6, 2013
1 person found this review helpful

I am the twin sister of someone diagnosed with Fragile X Syndrome and FRAXA gives me hope that one day there will be a cure.

Ways to make it better...

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

Never change a thing

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?

2013

September 20, 2013

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1 previous review
June 8, 2011

FRAXA began in 1994 with a dream of curing Fragile X -- now fast forward to 2011 -- there are currently clinical trials for medications to treat the core deficits of Fragile X going on in several cent... more

September 20, 2013

FRAXA is the future for our children. The research FRAXA is funding to find treatments for Fragile X is the future for our children. The medications that will be developed will be key for helping our children to live as happily and as independently as possible. And FRAXA funds and facilitates a tremendous amount of excellent research on a very small budget.

Ways to make it better...

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

Dramatically increase the dollar amount of contributions coming in since so much of the brain research FRAXA is funding to find treatments for Fragile X will help other brain disorders as well.

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?

2013

June 8, 2011
1 person found this review helpful

FRAXA began in 1994 with a dream of curing Fragile X -- now fast forward to 2011 -- there are currently clinical trials for medications to treat the core deficits of Fragile X going on in several centers around the country. Moonshot to the mind is the next frontier in medical research. Being a single gene disorder makes Fragile X a great model for other disorders of the brain as well, and could ultimately lead researchers to treatments for possibly autism, Parkinson's and Alzheimer's. FRAXA is an extremely efficient organization, and the people who are involved with FRAXA are totally committed to this cause. If you want your charitable dollars to really make a difference in the world, make a donation to FRAXA. My son is 14 years old and has Fragile X, and FRAXA gives me great hope that there will be medications in his lifetime that allow him to be happy and self-sufficient.

The Great!

I've personally experienced the results of this organization in...

I hope to get my son involved in some of the clinical trials currently or soon to take place so we can see first hand the benefits of the drugs FRAXA has been nurturing along for years now. FRAXA is gaining recognition as the model for a cure-oriented charitable foundation.

Ways to make it better...

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

Much work still needs to be done. Just like AID's, treating Fragile X will mean a cocktail of medications. The brain is very complicated so the basic research continues for the next components of the cocktail. Funding and great research will help FRAXA reach it's goal.

March 19, 2013
1 person found this review helpful

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Review from Guidestar
March 19, 2013
1 person found this review helpful

I have been intimately involved with Fraxa Research for more than a decade. I first visited Founders Katie Clapp and Mike Tranfaglia in their humble home office more than 16 years ago when my daughter was recently diagnosed with Fragile X. Their goals were clearly articulated back then: funding the most promising research to help find treatments for Fragile X. Today, Katie and Mike remain loyal to their words. While fundraising has been challenging over the past few years, the mission is stronger than ever. Expenses are kept at a minimum so that every single dollar goes into research. I know I echo the sentiments of parents all over the world who feel so fortunate to have found Katie, Mike and Fraxa: a lean, most efficient non-profit, wholly dedicated to finding a cure for Fragile X.

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?

2013

March 19, 2013
1 person found this review helpful

more

Review from Guidestar
March 19, 2013
1 person found this review helpful

I am proud to be a volunteer at FRAXA Research Foundation. Fragile X is a devastating diagnosis as our family knows first hand. However, when our son was diagnosed we immediately became involved with FRAXA and found that there is real hope for finding treatments for this genetic disease. FRAXA's main focus is on funding the most promising research. Just looking at the financials (http://fraxa.org/newsArticle.aspx?newsroom_id=63) you can see that, in 2012 as an example, 86% of money raised goes to research and 7% to education. That is phenomenal. The research FRAXA funds has led from a basic understanding of the disease to the medications that are currently in clinical trials. FRAXA has also hosted various scientific meetings that foster more collaborations among scientists in the field. This has quickened the pace of research even further. FRAXA hasn't lost sight of its original mission and continues to push forward, funding new ideas in research that are leading to many new treatment possibilities. For me, I have been proud to volunteer my time and donate money to FRAXA for the past 6 years because of the commitment to maintain the highest level of support for research. I feel that FRAXA's efforts will offer the best chance of reaching our goal of getting a real treatment for Fragile X to market.

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?

2013

November 6, 2012
1 person found this review helpful

more

November 6, 2012
1 person found this review helpful

When our precious Lucas was diagnosed with Fragile X Syndrome in 1999 we were devastated. We immediately became involved with FRAXA and had our first fundraiser in 2000. We continue to support FRAXA with an annual fundraising mailer, not only to raise funds for research, but to spread awareness of the disorder. Let's continue to support FRAXA in working towards a cure for my son and millions of others who suffer from Fragile X Syndrome.

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?

2012

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