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Loeys-Dietz Syndrome Foundation

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Nonprofit Overview

Causes: Health

Mission: Loeys-dietz syndrome foundation, inc. Is a non profit, charitable organization dedicted to bringing greater awareness to loeys-diets syndrome (lds). Ldsf encourages education about this and related connective tissue disorders, aids in identification, diagnosis & treatment of lds, foster research about lds and provides a support network for parents & families affected by lds.

Programs: Convened the 2014 loeys-dietz syndrome foundation conference in baltimore, md, where 204 participants from 7 countries benefited from medical updates by leading experts on loeys-dietz and opportunities to connect with and learn from each other. The first-ever medical guidelines for loeys-dietz, funded by the ldsf, was published in the online publication of the journal genetics in medicine, providing patients and caretakers a handy resource summarizing the best available evidence on managing loeys-dietz. Launched work towards the loeys-dietz registry, which will provide a unique resource for researchers to continue exploring ways to improve how we manage the impacts of loeys-dietz on the well-being of patients.

Community Stories

14 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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.

Review from Guidestar

General Member of the Public

Rating: 5

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.

Review from Guidestar

General Member of the Public

Rating: 5

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.

Review from Guidestar

Donor

Rating: 5

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.

Review from Guidestar

Volunteer

Rating: 5

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.

Review from Guidestar

General Member of the Public

Rating: 5

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.

Review from Guidestar

Joseph M.

Donor

Rating: 5

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.

Review from Guidestar

Heather M.

Client Served

Rating: 4

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.

Review from Guidestar

Marla H.

Client Served

Rating: 5

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.

Sarah L.

Client Served

Rating: 5

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.

Beth F.

Board Member

Rating: 5

I started the Loeys-Dietz Syndrome Foundation with genetic counselor at Johns Hopkins, Gretchen Oswald. As a parent with a child having a new diagnosis of Loeys-Dietz, it was encouraging to find that there were other parents out there dealing with the same issues and sharing similar stories that we experienced. We are growing strong, and our continued support allows us to provide the resource infrastructure so many families would have been lost without. We have been able to create educational factsheets about this rare genetic disorder, develop a website with a forum where LDS community members and friends may ask questions and reach out for strength and support. We have had a small gathering and brought in professionals in various areas dealing with LDS, and provided research opportunities. We acknlowledge the support of our community and thank them for helping us help others!

Board Member

Rating: 5

This organization is making great strides in raising awareness and community for those impacted by Loeys-Dietz syndrome. They truly are passionate about helping individuals get correct diagnoses, accurate medical management and researching better treatments for those with the disorder. Members are always willing to share stories and provide support for those who are new to the LDS diagnosis.

Review from Guidestar

General Member of the Public

Rating: 4

We are so greatful that there is LDSF. We have received a lot of information from the website and people alike. The 1st annual conference in June of 2010 was wonderful. The information we came home with was just incredable. Please keep supporting this cause, our little girl is only 10 and we want her around for a long time. With out continous research it wouldn't be possible.

Review from Guidestar

Client Served

Rating: 5

Its been a tough few years as person diagnosed with Loeys Dietz Syndrome as well as 7 living family members. We have a strong family history of this disease which is extremely rare and unknown to the medical community and general public. LDSF has down an outstanding job in helping us cope with the diagnosis as well as educate us on the resources available. They continue to support the families in need and continue to work hard at awareness and education. Superb foundation!

Review from Guidestar