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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.

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

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.

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

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

April 1, 2014

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1 previous review
May 28, 2013

The TS Alliance has been so amazing and helpful to my family and me. My son has tuberous sclerosis, and I can't even begin to explain how much it has helped our family to have trustworthy information... more

April 1, 2014

The TS Alliance has been very helpful to my family in dealing with my son's diagnosis of tuberous sclerosis. Probably the thing that they have done that has helped us the most is sponsored a webinar on dietary treatments for seizures a couple of years ago, presented by a leading neurologist. That presentation led to us putting him on the ketogenic diet, and he has been off seizure meds and seizure free for 8 months! They also sponsor studies to research new treatments and have brought my family close to others with this disease. Because of the TS Alliance I never feel like we are alone in our struggles. It's a wonderful organization.

More feedback...

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?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

May 28, 2013
1 person found this review helpful

The TS Alliance has been so amazing and helpful to my family and me. My son has tuberous sclerosis, and I can't even begin to explain how much it has helped our family to have trustworthy information about the disease and a place to go for support. I am thankful this organization exists-- they have done so much to improve treatment and diagnosis for people with this disease, people that otherwise wouldn't have much of a chance in life. Thanks to TS Alliance sponsored research studies, so much new information has come available. New and improved treatments have become the norm, treatments that have already helped my son have a better life.

More feedback...

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?

2013

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 25, 2014

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1 previous review
October 26, 2012

My granddaughter was diagnosed 2 days before her birth 23 years ago. Since then our family has experienced many manifestations of this horrible disorder. The organization has helped us with educatio... more

March 25, 2014

My granddaughter was diagnosed at birth, and at the time I never heard of tuberous sclerosis...
our family had to learn quickly and well about this disease, and how difficult it is to deal with ...
the National organization was very helpful with websites, and support to connect with other
families and creating and international community via the web.
Emily is now nearly 25 years old, and even tho she still has seizures and other symptoms, we are a very different family in cohesiveness, empathy and understanding towards all people with special needs.
we now have annual fundraisers locally and internationally and I don't think we could've learned and done as much as we did without this wonderful organization... I feel grateful each day for their existence.

More feedback...

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?

Life-changing

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?

2014

October 26, 2012

My granddaughter was diagnosed 2 days before her birth 23 years ago. Since then our family has experienced many manifestations of this horrible disorder. The organization has helped us with education, and referrals, and mostly with personal and emotional support to deal with everyday life, that has changed for all of us dramatically. There are as many variations as there are people affected, and for each group the organization has managed to provide peer support as well, as medical resources. Each day we are informed of new treatments and possibilities to help us deal with tuberous sclerosis.

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?

2012

March 24, 2014

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March 24, 2014

Our little grandson was diagnosed with TSC shortly after birth. At that point I was impressed with the Tuberous Sclerosis Alliance and found them to be very helpful. Since then, I have had the honor of being able to volunteer (in several capacities) for the organization. I am so impressed with the staff, some of the most dedicated and passionate people, I have ever met. Not only do they help families in a variety of ways, finding physicians, helping navigate the schools systems, lending support, etc, the entire organization is driven to find a cure for TSÇ. When it comes to the goal of finding a cure, these people are unstoppable!
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

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