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Shwachman-Diamond Syndrome Alliance Inc

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Nonprofit Overview

Community Stories

21 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

I am the uncle of a young SDS patient and was looking to make a real impact on research that could one day benefit her. I am so relieved that finally there is a patient-driven organization that understands how to use my donation for the right things. Thank you, SDS Alliance.

General Member of the Public

Rating: 5

So thankful for SDS Alliance and Eszter for working so hard on it. Thank you for making hope into action

Donor

Rating: 5

The SDS Alliance has been a fantastic resource for our family. It provides critical connections between families, detailed information to help our family navigate a rare genetic condition, and unparalleled connections with the scientific and medical community to advance research, therapies, and treatments for Shwachman-Diamond Syndrome. We appreciate the professionalism and dedication of the SDS Alliance to the SDS community.

Donor

Rating: 5

We are a family with three children from Hungary, Budapest. One of our daughter was diagnosed with SDS when she was 5.SDS Allience is very helpful, cooperative organization. We are very greatful for Eszter and her community. Thank you so much! Koszonunk mindent, Eszter!

Board Member

Rating: 5

I am an adult with SDS. This non-profit is the only one that represents not only children, but also adults with this devastating disease. This is the only place adults without SDS can meet virtually, and discuss the challenges of dealing with this disease. In addition, this is the only organization addressing challenges of providing the means for researchers to pursue interventions necessary to prolong life, and eventually discover a potential cure.

Donor

Rating: 5

Very helpful and supportive for our family when we got our daughters diagnosis

Donor

Rating: 5

After my daughter’s diagnosis of SDS, the Alliance made me hopeful. Hopeful that we will one day have treatments and a cure for SDS. Everyone in the alliance has provided me with a wealth of knowledge and I am forever grateful to this group. The alliance will find the cure! Professional, knowledgeable, kind, motivated... what more can you ask for in a rare disease non profit organization.

Isabelle L.4

General Member of the Public

Rating: 5

As the parent of person living with this orphan disease known as Shwachman-Diamond Syndrome, I will always be supportive of organisations that help spread the knowledge of its existence to gain enough support and resources for discovering possible treatments. My daughter was diagnosed as an infant and is now 36, the prognosis at the time of diagnosis was bleak but she is doing well. We are happy she found this Alliance for support and involvement.

1 Sara-Ann A.

General Member of the Public

Rating: 5

As someone who was diagnosed with SDS at an early age, the Schwachman-Diamond Syndrome Alliance Inc has helped me be part of a community of wonderful people who are dedicated in helping patients and families. Their dedication to the cause is wonderful and I can always count on them for information and help.

General Member of the Public

Rating: 5

When my daughter was diagnosed with SDS, I was lost. I didn't know what I could do or who to turn to. The Shwachman-Diamond Syndrome Alliance gave me actionable information and science-based hope at a time when other groups had little to offer but folk remedies and prayers. Every rare disease needs an organization like the SDSA fighting for its patients and looking for an evidence-based cure.

Donor

Rating: 5

The Schwachman-Diamond Syndrome Alliance Inc is committed to bringing different stakeholders together to share needed information and advance research.

General Member of the Public

Rating: 5

I adore the people behind the Shwachman-Diamond Syndrome Alliance organization who are extremely enthusiastic and dedicated to build a community and help research to find a cure for this rare disease.

General Member of the Public

Rating: 5

Someone I love has Shwachman-Diamond Syndrome and I see the urgent need for treatment options. The SDS Alliance has a passionate and capable leadership team and I find them serious and earnest in their work. In a short amount of time, they have demonstrated their commitment and dedication to the cause, created high quality educational resources and many new connections and collaborations in the research community. I hope more people can become aware and supprotive of the disease and help find effective treatments. I can't wait to see the mission come to fruition. SDS families unite!

General Member of the Public

Rating: 5

Shwachman-Diamond Syndrome (SDS) is a rare genetic disorder that is difficult to diagnose, and currently has no clear treatment options. Although the disease affects a small number of patients in the United States and worldwide, its impact on life span and quality of life can be devastating. Currently, SDS does not receive enough attention and research funding from the public, policy makers, and funding agencies. A non-profit organization such as the Shwachman-Diamond Syndrome Alliance will do much to bring knowledge, needed attention, and hopefully funding resources for more advanced research to SDS. Headed by Dr. Eszter Hars, a trained molecular biologist, and a mother of a SDS child, with a deeply personal commitment to help advance better treatments and life quality for those burdened by this disease, I cannot imagine a better person taking on this endeavor. I have known Eszter for many years and have seen how dedicated and sincere she is at solving difficult issues, for her family, as well as for others. I am pleased to see her now taking on this cause, and I have no doubt that Eszter and SDS Alliance will be a great advocate for those who are dealing with this disease.

Long Ngo, PhD

General Member of the Public

Rating: 5

I've had the great good fortune of working with Eszter (in a very small way) to bring awareness to Shwachman-Diamond Syndrome. She is a tireless advocate for her daughter and a wonderful person. Eszter faces each challenge/obstacle with a calm focus and a ferocious dedication. Her goal is to help raise awareness, to help others, and she does that with intelligence, passion and heart.
Finding a cure for a disease is a herculean task that requires a herculean effort.
I can think of no greater person or cause to support than Eszter and SDS Alliance Inc.

Donor

Rating: 5

I have been one of the very first donors and supporters of the SDS
Alliance because I know the founder and her family personally. I see the
passion, dedication, and know-how they have put in to help find cures and
therapies for Shwachman-Diamond Syndrome, from day one and steady growth
ever since. I know our support is making a difference in SDS patients
lives.

General Member of the Public

Rating: 5

Wonderful organization. Amazing work, in bringing a cure for rare diseases.

Donor

Rating: 5

I have had a wonderful and fulfilling experience helping the SDS Foundation. I know participating in the fundraising events touch the lives of many. SDS Foundation also provides a great summary of all things SDS in their e-newsletters, including summaries of progress made in the SDS field that would be presented at rare disease conferences, for example.

Kalman G.

Donor

Rating: 5

Eszter, the executive director is phenomenally dedicated and I think has the chance to make a difference to cure this rare disease.

To cure a rare disease it takes many people.

It takes a very special person to understand and have an impact on the complex systems of funders, study participants, scientists and collaborating institutions.

Eszter is that special person.

Eszter is a change-maker with the blended skills of a scientist, veteran marketer and the wife of an entrepreneur.

If you want to make a difference to cure SDS, invest in Eszter.

General Member of the Public

Rating: 5

The SDS Alliance is an embodiment of the phrase "the whole is worth more than the sum of its parts," and is an example for any non-profit that is attacking a global problem that requires a concerted research effort yet is sparsely distributed. The only way to make progress is to marshal resources and share knowledge to lower the barrier for individuals and individual communities to be able to make a contribution. The leadership team comes from a research background, so they understand what it takes to do the hard work!

Professional with expertise in this field

Rating: 5

The leader of this organization is non-stop and so very dedicated. We see her at every turn trying to help her community. SDS patients are lucky to have such a dedicated, talented and hard-working professional working. on their behalf.