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April 12, 2014

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April 12, 2014

My husband and 3 children all have Tuberous Sclerosis Complex and I hate to think where we would be without the support, encouragement, research and hope of the TS Alliance. I will never forget just over 11 years ago when I first heard the words Tuberous Sclerosis Complex. My husband and I were young parents with this beautiful 18 month little girl and the walls came crashing in around us. My mom was the first person to contact the TS Alliance and begin to gather information and introduce us to others that were on a similar journal. Since that original diagnosis we have heard it three more times. When my son Jake was born, he started having seizures at 11 months old that led to the diagnosis, when my husband and I did genetic testing and it turned out my husband had TSC and before our son Luke was even born and tubers were discovered on his heart and an amnio led to an early diagnosis. I have no real words to explain the journey we have been on (my daughter is now 13, Jake is 10, Luke is 7 and my husband is 37). The TS Alliance has helped carry us through some dark days and celebrated with us on the good days. They have walked us through the diagnosis, treatment options, numerous hospital stays, additional diagnosis of ADHD and Autism, issues with behavior and school and the need to know that others understand. The TS Alliance has helped bring together a community of people that have an ultimate goal of a cure for Tuberous Sclerosis. This community has been our constant support, encouragement and ultimately hope. We have no idea what the future holds and take each day as it comes. But I will say knowing the tremendous strides the TS Alliance is making in advocating research and educating society on TSC, I have hope that my kids will one day have a cure and TSC will not rule each move and decision they make.

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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?

2014

April 9, 2014

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1 previous review
October 29, 2012

The Tuberous Sclerosis Alliance is very important to me because it represents people like my little girl who are affected by a deadly disease. The alliance works to raise awareness of tuberous scleros... more

April 9, 2014

My daughter, Chloe, was diagnosed with tuberous sclerosis just before her 4th birthday, when she started having seizures. The doctors told us right away to visit the TS Alliance's website and said that is where we will find the most accurate information on the disease. If it weren't for the TS Alliance, I don't know where we would be today. If it weren't for all the money they raise that goes toward research, Chloe would probably be in a lot worse shape today, and I'm sure her life has been extended thanks to their hard work. We are thrilled to be able to raise as much money as we can for the alliance because we know it will benefit Chloe and others who have TS.

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?

2014

October 29, 2012

The Tuberous Sclerosis Alliance is very important to me because it represents people like my little girl who are affected by a deadly disease. The alliance works to raise awareness of tuberous sclerosis complex and raise money for a cure. It also directly helps the people living with the disease by advocating for them, educating them and helping them in any other way it can. If it were not for the TS Alliance, I would know nothing about the disease. I rely on their website for all my information. The alliance has made huge strides in recent years and will continue to do so if it gets enough support.

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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?

2012

April 9, 2014

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April 9, 2014

The TS Alliance is so important to us. Whenever we come across a doctor that doesn't know anything about TS, we send them to tsalliance.org - there is a special link for doctors. This happens more than it should. It was THE PLACE we went to after my son was diagnosed - I have spent hours and hours on their page for the newly diagnosed. It has also been invaluable for us helping his teachers understand the disease, as there is a special link for teachers, as well as information about IEPs. I can go on and on... We would feel pretty lonely and helpless in this disease if it weren't for the TS Alliance. Thanks.
April 3, 2014

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April 3, 2014

My daughter is 50 years old, she started having seizures when she was an infant 4months old. She had several of the characteristics of Tuberous Sclerosis Complex at birth but not diagnosed until she was 16 years old. We became aware of the TS support group in the following years. Since then the organization has grown tremendously to not only offer support and education in local groups,but we are involved as volunteers with the greater Chicago alliance walkathon to raise money for research . My younger daughter is a board member and my husband and daughters stepdad, is on a related board. We have gone to Washington DC in the past few years to advocate for federal funding for research. We have learned so much about TSC and are grateful to be able participate in the efforts to support individuals and families with this rare and complex disorder.

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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

When was your last experience with this nonprofit?

2014

April 1, 2014

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April 1, 2014

When my son was diagnosed with Tuberous Sclerosis in 1974 I finally had an answer to his multiple problems but no where to turn until I found the TS Alliance. I was a single mom of three with little income and was unable to send the Alliance much money but I kept getting their newsletters. Over the years exciting news of research findings were presented which gave me hope. And information on unknown possible ramifications of this disease would be exposed that would aid in communicating with his doctors certain tests that may be needed. The Alliance informed of new drugs being used for seizures and most recently the drugs used for shrinking AML kidney tumors. I broke down in tears when the Alliance hosted a webinar on the use of the drug Afinitor. This drug was being considered for my son and I was terrified. I was able to submit my questions to the doctor on the webinar and came away feeling confident that my son could try this drug. He had great success with it shrinking his kidney tumors and is being monitored. This could not have happened without the TS Alliance.

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?

2014

March 25, 2014

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March 25, 2014

Our son was diagnosed at 18 months (in 2008) following several seizures. Before his diagnosis, I had never heard of Tuberous Sclerosis before! With help from the TSA, we were able to navigate finding top notch professionals and services that would help support our son. In addition, we have been able to connect with other families in our community and state (and out of state) to provide support and develop relationships with. The TSA has been a tremendous help in advocating for my son's diverse needs.

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

When was your last experience with this nonprofit?

2013

March 24, 2014

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March 24, 2014

My son was diagnosed with TSC in 1995. I had been a Pediatric RN for 10 years. I had never heard of TSC. Our doctor only had 1 page of information. He gave us the number for NTSA, and the information we received was so wonderful! It so great having an organization like NTSA that helps parents understand what's to come for our children with TSC!

Ways to make it better...

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

none

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?

2014

March 24, 2014

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March 24, 2014

In the early 1990s our son was diagnosed with Tuberous Sclerosis and we felt the fear and devistation of this news. Mainly there was no one who could explain with any reasonable authority what this meant, what to do or not do. It was then we first reached out to a TSC clinic. It was there we found compassion, and understanding. Not only did they make their time available on a Saturday, but all the doctors, nurses, and volunteers were so very helpful and approachable.
March 24, 2014

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March 24, 2014

TS Alliance has been a wealth of resources and knowledge to me since my son was diagnosed at the age of 2. For the past 7 years, TS Alliance has educated school staff and has aided in his IEP development. As well as educating family members, caregivers, and his family physician. I am so grateful for the resources from TS Alliance, without them I wouldn't be as effective of an advocate for my son.
March 24, 2014

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March 24, 2014

Our son was diagnosed with Tuberous Sclerosis Complex in 2007. We were informed, supported and welcomed to the community by the then Tuberous Sclerosis Alliance...wonderful staff, detailed, up to date information, print outs for doctors, parents, teachers and therapists. They are a full service operation that never gives up on supporting families, looking for a cure and informing the public about this awful disorder.

Ways to make it better...

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

move them to my local city so I could visit and meet them.

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

When was your last experience with this nonprofit?

2014

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