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15 Reviews
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February 20, 2011

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Review from Guidestar
February 20, 2011

I recently was diagnosed as having a genetic abnormality that makes my family members and I prone to aneurysms. Several family members have died of aneurysms as a result. The Loeys Dietz Syndrome Foundation has provided me with reassuring information and their forum has allowed me to speak with other people who have this rare disorder. So many issues come up that are difficult to discuss with medical professionals in the time alloted for an appointment. It has meant a lot to me to be able to read comments on the forum and post my own concerns about issues like pregnancy, childbirth, insurance, surgeries and symptoms. It has meant a lot to be able to read about those who live with this disorder and to know that it is not necessarily a death sentence.

The Great!

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

My confidence and the amount of knowledge I have about my own health condition has increased dramatically as a result of the Loeys Dietz Syndrome Foundation. Their website has allowed me to meet people all over the world with this rare disorder online and connect with the few people locally that have the same condition I do.

Ways to make it better...

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

More medical professionals posting on the forum, perhaps a 'library' of downloadable research.

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?

Quite well

How did you find this group?

Googling for more information about my own condition and the recommendation of my specialist.

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

That the diagnosis was actually a blessing in disguise - knowing that I have this condition I can act to prevent my own death through regular testing and surgery to correct aneurysms. I also learned that I can have children and that there may be ways to prevent passing this genetic condition on to the next generation.

When was your last experience with this nonprofit?

2011

February 19, 2011

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Review from Guidestar
February 19, 2011

I have a daughter with LDS, one of only a few hundred diagnosed. With very little information available about this disorder, the LDS Foundation has become vital for providing us with information. I constantly go to their website for information and support. This foundation has kept us out of the dark, it is the only place I know to read first hand from others affected with this disorder.

The Great!

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

I was able to attend the LDS Foundation Conference and gain invaluable knowledge as well as relationships.

Ways to make it better...

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

I would encourage more people to volunteer their time and resources toward this organization.

February 14, 2011

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Review from Guidestar
February 14, 2011

Our granddaughter was diagnosed with LDS a few years ago. We as a family have experienced first hand the support the foundation is to those with this disease. Our son and his family have had the opportunity to meet other families who completely understand the uncertainity of LDS. It is also comforting to our granddaughter to meet those who are just like her. They are all uniques individuals with an inner strength to carry on as normal as can be, dispite the handicaps and numerous surgeries they must indure. There is always on going research being done to find out more about the disease, it's causes and effects it has on the individuals with LDS. Since The LDS Foundation is fairly new we spread the word to all we know about the disease and how we all can help the foundation with volunteer hours and donations for the continued research.

The Great!

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

The help this foundation (organization) has been to my son's family.

Ways to make it better...

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

None

February 14, 2011

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Review from Guidestar
February 14, 2011

As the retired parent of an adult child diagnosed with Loeys Dietz syndrome, it is comforting to know that others with the same issues are available to guide our family member. The physicians, genetic counselors, board members,other Loeys Dietz family members and interested individuals are so caring and down to earth. There has been a wealth of new information in the past few years, willingly shared by these folks. The first annual conference in Baltimore was so interesting and so much fun at a very minimal expense to us. It is much appreciated that the foundation board understands that all families are not well to do and can not routinely spend thousands of dollars for conferences, but that we are still greatly interested and need the support and information these events provide. Thanks for making the conference affordable. We will continue to support the Loeys Dietz foundation in any way that we can.

The Great!

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

The conference was very informative. I was able to talk to doctors and other health professionals about Loeys Dietz issues.

Ways to make it better...

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

I like it the way it is. Informal, inexpensive and welcoming.

February 14, 2011

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Review from Guidestar
February 14, 2011

It's been so great to have found LDSF, my son is newly diagnosed and trough this community I've found a lot of knowledge ans support to carry on life with this condition.

This must go on, with our help, in order to create more awareness and finally a cure to this desease.

The Great!

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

Support and strenght from other members

Ways to make it better...

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

create more sharing opportunities

February 14, 2011

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Review from Guidestar
February 14, 2011

My husband and son were diagnosed with LDS a few years ago. When we heard the positive diagnosis, we thought we had received a death sentence and were all alone. However, the LDSF has given us more support than we could have imagined. By connecting with others through the foundation's website and social networking, we know we are not alone. Our struggles are the same as so many in the world of Loeys-Dietz. Additionally, the information we have gained from this network, the website, and the educational factsheets have made us feel empowered rather than doomed. I cannot thank the foundation enough for its work to better the lives of families like mine. I look forward to attending the next convention with my family.

The Great!

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

the pamphlets for teachers/schools about LDS, networking, information

Ways to make it better...

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

more guidance on how to assist the organization, pins or awareness bands for LDS, update website more frequently, utilize social networking more

February 14, 2011

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Review from Guidestar
1 previous review
February 14, 2011

Having a family member with this syndrome, this organization is able to provide a resource of information about the syndrome as well as treatment options and the latest research being conducted. Alth... more

February 14, 2011

Having a family member with this syndrome, this organization is able to provide a resource of information about the syndrome as well as treatment options and the latest research being conducted. Although this syndrome is not very widely known, the ability of the foundation to promote awareness to the general public and medical professionals is an invaluable resource.

The Great!

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

attending its first conference in Baltimore.

Ways to make it better...

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

expand the network of volunteers and individuals supporting the foundation.

February 14, 2011

Having a family member with this syndrome, this organization is able to provide a resource of information about the syndrome as well as treatment options and the latest research being conducted. Although this syndrome is not very widely known, the ability of the foundation to promote awareness to the general public and medical professionals is an invaluable resource.

The Great!

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

attending its first conference in Baltimore.

Ways to make it better...

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

expand the network of volunteers and individuals supporting the foundation.

February 12, 2011

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Review from Guidestar
February 12, 2011

Having been newly diagnosed with LDS, it was great to find a website with information. It's been helpful to go back and read over the forums and realize that I'm not alone in this journey and even though there haven't been many people diagnosed with LDS, there are so many things that I've experienced that others have too. Even looking at the pictures of the kids, some of them are like looking at my own pictures as a child. It's also been a good source of information and support while I prepare for my upcoming heart surgery. It would be wonderful for the organization to be able to have the funds and workforce to update more frequently and get the information out to more hospitals, doctors, the public, etc. My own doctors had never heard of LDS until I walked in their door and ever since they've been researching all they can.

The Great!

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

I have joined in the forums seeking information and sharing as well.

Ways to make it better...

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

Updates more often and make the information more widely available to hospitals, doctors, patients and families.

February 12, 2011

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February 12, 2011

I learned of this foundation after my husband died of this syndrome. In lieu of flowers, I asked for donations be sent to the Loeys-Dietz Syndrome Foundation in memory of him. My husband had many surgeries and many complications and the more funding we can have for this foundation, the more research can be done. This foundation has been a great support for me.

The Great!

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

I enjoy looking at the forums and seeing all that is happening. I like to know that there are people out there going through similar situations.

Ways to make it better...

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

More funding , More products to sell to help raise funds.

February 11, 2011

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February 11, 2011

The Loeys- Dietz Syndrome foundation has played a vital role in my family's life. My husband, as well as my 2 children were diagnosed in 2008 with LDS. The foundation has encouraged strength, as well as given me the ability to communicate with other families faced with the day to day challenges that the LDS patients may face. The forum that the foundation has created has helped us reach out to other members of the LDS Community. Also the educational brochures have helped my son's school as well as his doctors learn more about this rare disease. The foundation recently held a conference with a vast amount of information. They had highly educated doctors as well as support groups. It was an amazing event, and I was thankful for the foundation for providing us with that opportunity.

The Great!

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

At my children's last appointment, the doctor said they went to a conference to learn about the rare disease. It was the first time in 3 years, they didn't need to ask me what tests my children need have or their new prescription dosing! That conference was just one of the wonderful things that the Foundation had done for me, indirectly.

Ways to make it better...

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

A few changes to the organization that I would encourage, would be more funding. The world needs education, resources and awareness on this new, rare disease. Everything is run by volunteers, so it would help to have a staff to help with the foundation. Also, it would be great to have better communication with this organization, including updating websites with information and materials.

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