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13 Reviews
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October 6, 2014

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October 6, 2014

The International Rett Syndrome Organization is the leading Rett Syndrome organization in the world.

IRSF is vigorously searching for a cure/reversal of Rett Syndrome. While doing so, they are the only organization that helps with TODAY's symptoms. They have been with us since our
daughter's diagnosis at 17 months. Sorel is now almost nine years old and has benefitted greatly with all the early intervention of professionals from this wonderful organization. I don't know where we would be without them.

We are truly blessed to be surrounded by all these passionate professionals that I can call family.

I recommend reaching out to this organization if one feels that there daughter/son has Rett or is showing signs of Rett Syndrome.

Sincerely,
Chris (Sorel's Dad)

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When was your last experience with this nonprofit?

2014

October 4, 2014

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1 previous review
December 16, 2011

I did not choose this path.....Rett syndrome chose me because my granddaughter, Naomi, has Rett syndrome! I am a grandparent representative and I'm also on IRSF's Family Advisory Board. I know first h... more

October 4, 2014

I would not be a part of this wonderful organization if it weren't for the fact that my granddaughter was born with Rett syndrome. Now, after several years of involvement with IRSF....Rettsyndrome.org, I truly believe that we are advancing towards a cure for this devastating disease. IRSF is the largest, most comprehensive and focused organization for parents, scientists, interested professionals and others concerned with Rett syndrome. IRSF has been recognized and awarded for its critical purpose and careful stewardship. The mission for IRSF is to accelerate research for treatments and a cure for Rett syndrome while improving the quality of life for those living with this complicated syndrome.....by providing life-saving information, programs, services and support forums.
Submitted by Donna W/
December 16, 2011
2 people found this review helpful

I did not choose this path.....Rett syndrome chose me because my granddaughter, Naomi, has Rett syndrome! I am a grandparent representative and I'm also on IRSF's Family Advisory Board. I know first hand the effect Rett syndrome has on its victims and their families. I also know that IRSF has made a hugh and positive impact for my granddaughter and her family, by reaching out, providing support, services, funding, continuing research and awareness for treatments and a cure. I volunteer for IRSF because I feel that I CAN make a positive difference for Rett families by listening, and letting them know that they are not alone! I continue to spread Rett awareness to all who will listen, including 30 state governors, through their October Rett Awareness Proclamations. Because of The Internatioinal Rett Syndrome Foundatiion (IRSF) I continue to have hope!

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

October 3, 2014

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October 3, 2014

This organization does it all - family support via internet, social media, yearly conferences, professional medical experts doing vetting to get the best possible therapies for our kids - one on one support for new parents - webinars on new technology. When it is hard to keep up with the ever changing Techo world - IRSF is doing it for parents, providers, educators and anyone else who is touched by our Rett kids!!
October 3, 2014

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October 3, 2014

Truly the leading Rett Syndrome organization in the market. They just rebranded as rettsyndrome.org and updated their website so folks like rgoodman (Comment on this page) can find the info they need. This organization leads the right approach to treatments, studies, and research for rett syndrome. This non profit was there for my family when our daughter was diagnosed.
October 2, 2014

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October 2, 2014

Our daughter is 35 and has Rett syndrome. We finally received the diagnosis when Heather was 10 years old. When we reached out to other families it gave us hope and strength to be part of something working to find a treatment and cure. We have been advocating, educating and spreading awareness of Rett syndrome ever since. It is great to be able to meet and talk to other families as they learn about their daughter’s diagnosis and we all help each other get through this new adventure. IRSF has been our connection for support and education for over 25 years.
January 17, 2013

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January 17, 2013

My daughter has Rett syndrome, and it robbed her of every skill needed for independence by 18 months of age. We lost our way as parents with this diagnosis. But with the immediate help and information from this organization, I was gifted trusted information and a solid foundation from which to be believe in the potential of research, and I learned the most effective things that I could do to keep her healthy and thriving. Today she is 10 years old and still working so hard every day. We are so proud of her. Without the right information from Day One, I don't think that would be the case. I have now dedicated myself to helping others in the same way while advocating for and supporting the advancement of research. We have not given up Hope, and that is a precious thing. Thank you IRSF! You have our trust and support.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 27, 2012
2 people found this review helpful

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September 27, 2012
2 people found this review helpful

Trying to find out any information about this foundation is practically impossible from the IRSF website - it's unbelievable that their Annual Report and 990 have not been updated since 2010!

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Will you volunteer or donate to this organization?

Unlikely

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

Some

When was your last experience with this nonprofit?

2012

February 21, 2012
1 person found this review helpful

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Review from CharityNavigator
February 21, 2012
1 person found this review helpful

IRSF has been helping families who have a child with Rett Syndrome for many years. It is an excellent source for information, ideas, therapies, advice and hope for Rett families. I'm a busy working mom and my daughter with Rett is 28 years old. I turn to this organization to keep me updated in all areas regarding the care of my daughter. Parents support each other and give each other hope and strength to manage their more than usual difficult lifes. The funds that have been raised through IRSF have done so much for research that a light at the end of the tunnel can now be seen. Our prayers for our daughters and for many other types of disorders, are being answered, and IRSF is helping to lead the way.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

November 17, 2011

IRSF has been instrumental in my families ability to cope with the diagnosis of our daughter with rett syndrome. Right from the start their knowledgable and supportive staff was there for us to ask questions and lean and get involved in fundraising. IRSF has a crucial role in raising money for research and family support. I jumped on board as a volunteer right away by chairing a local event here in CA. I am now serving as a regional rep for IRSF to help other families on this journey. IRSF is an AMAZING organization-one I dont know what we would do without~!

The Great!

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

I have experienced the results of this organization in my personal family life-on a daily basis.

Ways to make it better...

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

none.

August 26, 2011
1 person found this review helpful

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Review from CharityNavigator
August 26, 2011
1 person found this review helpful

IRSF is a very well run organization. Our family has worked with IRSF for nine years, to organize fundraising events and raise awareness of Rett Syndrome. There is a personal connection with IRSF staff and families/community members involved. My daughter has benefited from the information IRSF provides. The IRSF staff and board members all have a personal involvement and drive to raise funds to find treatments and a cure that will better the lives of those affected with Rett Syndrome.

The Great!

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

working with the staff at IRSF. I have volunteered in the office, and worked on various fundraising events. I have a daughter with Rett Syndrome who has been embraced by the office staff at IRSF.

Ways to make it better...

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

Continued awareness of Rett Syndrome and what IRSF is doing to raise funds for Research to find treatments and a cure. The treatments and cure for Rett Syndrome will benefit many other disorders.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

They found us. They contacted us 10 years ago when our daughter was first diagnosed.

What, if any, change in your life has this group encouraged?

I have received support, continued educational information and a place to go to try to make life better for my daughter.

When was your last experience with this nonprofit?

2011

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