Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
100 Reviews
1234.915
Write A Review
March 19, 2014

more


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

June 5, 2013

more

June 5, 2013

What a wonderful organization! TS Alliance provides endless support for all those seeking it. My nephew has TSC and this organization has been an amazing source! Thank you!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

May 30, 2013

more

May 30, 2013

The Tuberous Sclerosis Alliance has provided so much to me and my family in the last year. My four year old was diagnosed with TSC and I thought it was over for him. Everything I searched was worst-case scenarios and I just couldn't wrap my head around the new direction of our lives until I found the Tuberous Sclerosis Alliance. This is where I found reliable information that assured me he was going to be the same little boy, but with new obstacles. This is where I finally realized that the disorder manifests differently for almost every person who suffers. When I finally found the courage, the alliance is also where I found others like me--moms who just want the very best for their children. Once he started school, I once again turned to the alliance for information I could pass on to his teachers. The Tuberous Sclerosis Alliance has provide me with invaluable resources and support throughout our short journey. I look forward to giving back in the future, when I am the veteran who has been there and done that. I look forward to getting involved in educating the public, fundraising, and providing support to other families looking for peace of mind the alliance has been able to provide me.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

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

I am a mother of two children with tuberous sclerosis complex also known as Tsc. Life is very hard on my family. We are always at drs appt and running test on the girls. We have had several bad seizures due to Tsc. Tuberous sclerosis effects both my girls in the brain,kidneys,heart,skin and eyes. My older daughter suffers with seizures that makes her also have learning problems, add, anxiety and sleeping issues. Everyday is like walking up to the unknown. There seizures can happen anytime and just one set back takes a whole on our family. The Tsc website has been a life saver for me. It helps me with finding out info and new med for the girls! Just having this website has been such a help. The TS Alliance is great

Ways to make it better...

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

I would not change anything!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

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

I am a mom to a daughter who is now 8, but diagnosed with Tuberous Sclerosis when she was only 6 months. Although our doctor knew to diagnose her, he did not know that much about Tuberous Sclerosis. While he searched for someone to help us out, we found The Tuberous Sclerosis Alliance online. It was a gold mine of information. Immediately, we started learning as much as we could from their website. The first thing we did was to find other people with children affected with Tuberous Sclerosis. They were lifesavers for us. We didn't know what to expect or what our lives would be like. But we found a community that was open and honest and there for us in the middle of our darkest nightmare. Then, through the website, we found an amazing specialist. We found out all about the right questions to ask and the right tests to ask for. Now, our daughter is doing quite well and we LOVE our doctor. Several years back, we were able to attend the Tuberous Sclerosis National Conference in Chicago that was put on by the Tuberous Sclerosis Alliance. This was such an amazing time for us. We learned so much about doctors, medications, treatments, and research from the top TS specialists from around the country. And we met some amazing people. I am close to many of the people I met there and online through the TS Alliance. Without the TS Alliance, our home would be a lot different. The TS Alliance taught me about the facts, not the rumors, about what this disease meant for our daughter. And most importantly, the TS Alliance provided us with the one thing we couldn't face this disease without: HOPE.

Ways to make it better...

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

Provide them with more money. The research they are doing can open up pathways to cures for diabetes, epilepsy, and cancer.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 28, 2012

more

October 28, 2012

Our daughter was diagnosed in the late 1980's and the help of the National Tuberous Sclerosis Association was invaluable! We have gained a great deal of knowledge and support from the TS Alliance network. It is wonderful to see the organization grow and continue to build strong relationships with families involved with tuberous sclerosis over the years! Thank you to all the dedicated staff in the national office and all of the professionals and volunteers that make it happen!

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

October 28, 2012
1 person found this review helpful

more

October 28, 2012
1 person found this review helpful

I was in contact with my dear sister when her firstborn child first had seizures and she didn't know what could be causing them...was with her through the long dark days when she frantically looked for help and found only ignorance and discouraging pessimism among doctors...and, as the wife of a special ed. teacher, I knew about the magazine called EXCEPTIONAL PARENT, and encouraged her to write to them. She did, and the rest, as they say, is history! I have watched how this organization, that she and the other 3 moms she found in California started, has grown and helped countless families worldwide. I know how much it meant to her and her beautiful daughter as their family struggled for 31 years to give their one TSC person as full a life as possible, in spite of her terrible disease. And all the while my sister has worried that her other 3 children might also develop it, or if not them, maybe their children...because so little was known about the cause or treatment. Now that worry has diminished at least, because so much progress has been made by dedicated medical scientists and doctors, with the organized help from all those motivated parents and families, and lots and lots of volunteers who have been enlisted in their cause. And as a person who works with medical scientists, I know that every breakthrough in one of these genetic diseases has an impact on many others--including cancer, autism, Parkinson's, multiple sclerosis, and Alzheimer's. Someday this growing body of knowledge is going to make cures and treatments available for many more people beyond the TSC community, too. It already has advanced our collective understanding enormously, and the influence grows exponentially. This disease that was once thought to affect so few people that it "wasn't worth studying" has turned out to be the impetus behind so much positive change for so many...surely there is a lesson there for the world, on so many levels!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

October 28, 2012

more

October 28, 2012

At the time of diagnosis until recently was the only place to get update information. To read the experience from other parents gives us the knowledge what to expect and ask from non experienced doctors. Very crucial place for this rare disorder.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

October 26, 2012

more

October 26, 2012

Almost 30 years ago, our son Jonathan was diagnosed with a "RARE CONDITION". We lived in a third world country then. The doctors referred us to the National Institutes of Health in Bethesda, MD. There we learned the name of the "Rare Condition". It was TUBEROUS SCLEROSIS. In the 80's we did not have the tools we have today, like Internet and Google. Just the Public Library, where we found the only book published. It was by the late Dr. Manuel R. Gomez, (RIP). We flew to Rochester MN where we met Dr. Gomez and his team and obtained the best care we could possibly ask for. Also we learned about the then TSA - Tuberous Sclerosis Association. The Association can best be described as a light bulb in a strange dark room. Almost thirty years ago, we felt the same warmth and compassion new parents feel as they learn of the hard task ahead of them when they discover that theis son or daughter is affected by this condition. Today, we are greatful to the work of the Association, for they are unconditionally by our side. Working tirelessly to bring families together, to share our experiences, our achievements and our goal. We are the Aizenstat family, from Miami, Florida.

More feedback...

When was your last experience with this nonprofit?

2012

October 26, 2012

more

October 26, 2012

I was invited this year to a charity walk sponsored by TS Alliance. It was very well run and professional. All was run by volunteers in the local community. I was impressed with the activities, event, materials and information provided as well as the music from a professional group. We were also served great food from National Sponsor Buffalo Wild Wings. Delicious! But what made the difference for me was to meet the parents, grandparents but especially the affected children of TS Alliance. I made an online donation from my smart phone using the www.tsalliance.org online donation site. And as people passed by the event; many people stopped and made cash donations. I just cannot say enough about this event

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers