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100 Reviews
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March 24, 2014

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March 24, 2014

My son was diagnosed with TS in 2003. The TS Alliance was key to provide us resources in order to learn more about our disorder. They have top notch physicians and researchers who are continually identifying new therapies for our children. Recently, our son was diagnosed with hydrocephalus and the local hospital wanted to do immediate surgery. With the assistance of the physicians associated with the TS Alliance, we were able to begin medication which has eleviated the fluid on his brain without surgery. All of this was due to such a top notch group of people and the financial support that is attributed to the TS Alliance. In addition, we appreciate the family support in our local market. Keep up the good work!

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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?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

March 20, 2014

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March 20, 2014

I would be floundering in an ocean of ignorance about my disease if it wasn't for TSA. Tuberous Sclerosis Alliance led me to the best doctors I needed to treat my various conditions due to this disruptive disease. They directed me to the Inspire website where I have found comfort and knowledge from others who have it. TSA has provided conference calls so adults can learn more about TSC. If it wasn't for TSA I would have no understanding of what I had been dealt with. I am so grateful to TSA.

Ways to make it better...

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

Make it easier to donate money by setting up auto withdrawals

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

June 4, 2013

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1 previous review
October 26, 2012

I'm a volunteer, but also a client served. The Tuberous Sclerosis Alliance has been a wonderful resource for my family, particularly since we had never even heard of this condition until my son was d... more

June 4, 2013

I had never heard of Tuberous Sclerosis before my son's diagnosis. I was at a complete loss about what it meant for him. Our neurologist put me in touch with the Tuberous Sclerosis Alliance and I was so impressed upon first reaching out to them that I immediately offered to volunteer in whatever capacity I could. It has provided me a wealth of information and connected me with a community that provides enormous support to those living with TSC. I can't express just how much this organization means to all of the families it helps.

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?

2013

October 26, 2012

I'm a volunteer, but also a client served. The Tuberous Sclerosis Alliance has been a wonderful resource for my family, particularly since we had never even heard of this condition until my son was diagnosed earlier this year. We were devastated, knowing only what we found via "google" when the diagnosis was first conveyed. Once we were connected with the TS Alliance, however, we felt like we understood better the implications for our son, and were better able to cope. In fact, I felt so good about the organization, I immediately volunteered as the education liaison in Massachusetts, and hope to participate in the Alliance's legislative advocacy efforts. In sum, the education resources and advocacy efforts of the Alliance truly make a difference for families affected by TS.

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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

June 3, 2013

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June 3, 2013

I hadn't ever heard of tuberous sclerosis when our son was diagnosed at 3 weeks of age. I remember being in shock upon receiving this diagnosis. I visited the Tuberous Sclerosis Alliance website almost immediately and had no idea what our future would hold. I remember reading through resources for the newly diagnosed and printing off a notebook that would help me organize all my son's medical care. I still use the notebook today, four years later. The TS Alliance has continued to provide invaluable resources as we navigate our lives with TSC.

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?

2013

May 31, 2013

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May 31, 2013

Our son was diagnosed with TSC seven months ago at 3 months old. The TS Alliance has proven to be an excellent resource! They provide a wealth of information about treatments, research and a future full of hope for those living with TSC. Being able to connect with others who are going through similar experiences is invaluable! Thank you 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?

2012

May 31, 2013

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May 31, 2013

When my daughter was diagnosed in November 2012, the Tuberous Sclerosis Alliance was our first source of information. Given that we had never heard of TSC before I couldn't believe all the information and resources that were available on their website. Everything we googled brought us right back to the Alliance. They have been very responsive when I have emailed or called. They are cutting edge in the way they deliver information and get people involved. I have been impressed with their creative fundraising efforts. In short, they have been a life saver during a very stressful time. I wish every disorder and illness had this type of organization for parents. Really top notch!

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?

2013

March 19, 2014

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1 previous review
May 31, 2013

I learned about the TS Alliance 6 years ago when my son was diagnosed with TS. The Alliance has been a wonderful support for our family with many resources needed through the stages of TS. I am so gra... more

March 19, 2014

I am so grateful for this organization. They have given us support and information as well as a kind friend to help navigate through this disorder. We would not be where we are today and have achieved our successes if it were not of the support of the TS Association! Thank you!
May 31, 2013

I learned about the TS Alliance 6 years ago when my son was diagnosed with TS. The Alliance has been a wonderful support for our family with many resources needed through the stages of TS. I am so grateful to have the Alliance!

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

May 30, 2013

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1 previous review
October 31, 2012

Our 3 year old daughter was diagnosed 2 years ago with TS. The Tuberous Sclerosis Alliance has been a huge support in helping us find resources to deal with daily challenges. They are also instrumenta... more

May 30, 2013

When our daughter was diagnosed at months with TSC the Tuberous Sclerosis Alliance was a tremendous help in terms or providing us with the resources to understand and cope with the challenges ahead.

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?

2013

October 31, 2012

Our 3 year old daughter was diagnosed 2 years ago with TS. The Tuberous Sclerosis Alliance has been a huge support in helping us find resources to deal with daily challenges. They are also instrumental in facilitaing research towards a cure, rasing funds, and increasing awareness. It's very reassuring to myself and family knowing there's a great organization out their like the TS Alliance.

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?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

May 28, 2013
1 person found this review helpful

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May 28, 2013
1 person found this review helpful

When my daughter was diagnosed with TSC I thought my world was coming to a end. Finding TS Alliance help me find the way for a better life for my daughter and my family. It was a great resource for accurate information and ability to connect with others going through the same thing.

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?

2013

May 28, 2013
1 person found this review helpful

more

May 28, 2013
1 person found this review helpful

The Tuberous Sclerosis Alliance began playing a role in my family's life in May 2012 when my unborn nephew was diagnosed with TSC. I cannot say enough great things about the support, knowledge, comfort and friendship that they have provided to my sister, brother in law and nephew. All of this was also felt by my family and our friends at the TS Walk last weekend. I'm hopeful that with the TS Alliance at the helm, we will find a cure for people living with TSC, especially my nephew!

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?

2013

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