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June 4, 2013

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1 previous review
October 25, 2012

When my third grandson was born in July of 2011 with tumors in his heart, left eye and brain our family was not prepared for the diagnosis of Tuberous Sclerosis. Thanks to the TS Alliance we received ... more

June 4, 2013

Thank you, Tuberous Sclerosis Association for all the guidance and support...... for my precious grandson, who is afflicted with TSC2. I am hopeful for a brighter future for these children!

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When was your last experience with this nonprofit?

2013

October 25, 2012

When my third grandson was born in July of 2011 with tumors in his heart, left eye and brain our family was not prepared for the diagnosis of Tuberous Sclerosis. Thanks to the TS Alliance we received excellent guidance and all our questions were answered. My sweet grandson was having trouble with the anti seizure drugs that were prescribed for him at birth. it seems that certain medications that prevent seizures in patients can do more harm than good for these children. TS Alliance was knowledgeable and guided us with the proper combination medications. Don't know where we would be without the help of TSC? Thank you National Tuberous Sclerosis Association for helping our children and their loved ones cope with this condition. Praying for a cure every day! Sincerely, Stephanie Langbein (grandmother to John Fitzmaurice)

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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

June 4, 2013

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1 previous review
October 26, 2012

The TS Alliance has been an unbelievable resource to my family and others affected by TS. Kari and her team are a passionate group of people who are dedicated to finding a cure while improving the li... more

June 4, 2013

As the father of a son affected with TSC the TS Alliance has been a tremendous resource to our family. The group is comprised of passionate individuals who care deeply for improving the lives of those affected and ultimately finding a cure. They are truly inspirational.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

October 26, 2012

The TS Alliance has been an unbelievable resource to my family and others affected by TS. Kari and her team are a passionate group of people who are dedicated to finding a cure while improving the lives of those affected. I am proud and honored to join the cause as a Board member of the TS Alliance come January.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

June 4, 2013

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June 4, 2013

When my 14-year-old son was diagnosed at 2 months of age I had never heard of tuberous sclerosis complex. My husband and I were shocked and scared. We didn't know what to expect. We were very fortunate that our son's geneticist had recently been to a conference where he learned about TSC and referred us to the NTSA, now the TS Alliance. I have met some of the greatest people I have the honor of calling friends who not only shared their stories with me but also helped me get through those tough times of seizures with my son. The TS Alliance does more than just raise awareness and funding for research - they also connect adults and families of children with others so that we don't have to go through it alone. These people are genuine in their caring for the community and in their commitment to finding a cure!

Ways to make it better...

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

try to find a way where they could spend more time with the community. They work very hard and travel to help with walks held nationwide, fundraisers and regional conferences, as well as putting together web and phone conferences with specialists, and working with volunteers and board members with our March on Capitol Hill to guarantee support for research funding.

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

June 4, 2013

more


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.

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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?

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.

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?

2012

June 3, 2013

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June 3, 2013

I honestly had never heard of Tuberous Sclerosis before my husbands cousins son was diagnosed with it. I started reading up on it and I was amazed at how many strong and brave families that deal with this disease. Myself and my family had the honer to be a part Evan's Army and to be able to be a part of the walk that took place on May 18th. The park was filled with amazing families. I pray that new technology and research will bring answers will help to find a cure. I look forward to supporting this disease in any way possible.

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

June 3, 2013

more

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

more

May 31, 2013

My Name is Angelika Kodat and I am the Vice Chair of the German Tuberous Sklerosis association ( TSD eV ) and I am also the president of the new European TSC Association ( E- TSC ).
I am a mother of 4 children ( two Girls and two Boys ) , the 2nd has TSC. The children are between 22 and 17
years old.
I am involved with the TA Alliance since 2006. They all are doing a great work for all the TSC affected People around the world. That`s why I make so much contacts in Europe to be stronger against TSC. And now we have E-TSC. Thank you so much TS Alliance for your well example!!!!
With the contacts around the world, specially with the US and almost the CCHMC in Ohio (Prof. Franz and his Team ) . Then there is Katie Smith, a wonderful Person and a wonderful friend to me.
My daughter Anni had a very strong crisis 3 years ago. And without the contact to David Franz and others we didn`t manage it. Now she is 20 years old, seizure free and I am so blessed for the TS Alliance ( Katie Smith ) and Prof. David Franz. Thank you so much for your help in that worse time!!! That is Support around the world against TSC, . We are helping each other at each time ( think about the time difference). I am glad to know so much members of the TS Alliance and around the world. Thank you!!
Angelika Kodat
Vice Chair of the German Tuberous Sklerosis Association ( TSD eV)
President of the European TSC Association ( E-TSC )

More feedback...

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

None

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?

2006

May 31, 2013

more

May 31, 2013

Our forty-nine year old daughter developed the symptoms of TSC within six months of her birth; white patches on her skin, sleeplessness and infantile spasms. The only anti-convulsants at that time were phenobarbital (which produced a paradoxical effect) and the phenol-hydantoins which did little to control the multiple daily episodes. In her mid-teens she was finally diagnosed by a neurologist familiar with the disease and also with the organization of Tuberous Sclerosis Alliance. We started attending meetings in the Chicago area and joined the TSA shortly there-after. What a blessing this has been. The dedication to helping patients and families is so apparent and appreciated. The active fund-raising and lobbying for research dollars is on going but most importantly to us, the patients and families, is the constant sense of progress and hope for a cure. Can't say enough about the Staff and Board of TSA.

Ways to make it better...

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

None. It is evolving as it should.

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?

2013

May 31, 2013

more

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

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