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
Previous | 1 2 34 |
Write A Review
April 1, 2014

more


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

more


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

more

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

more


1 previous review
June 18, 2013

TSAlliance has been a great organization! I've actually been involved as a parent since 1979 when it was the National Tuberous Sclerosis Association and have benefitted from the support of the group ... more

March 24, 2014

The TS Alliance is a great organization! I am the parent of a 35-year-old son with TSC and have been involved with this organization for 33 years. For the past few years, I have been a volunteer in the National Office and have witnessed the expertise of the staff, as well as their integrity in helping support the members of the TSC community. They give support to newly diagnosed individuals, as well as others who are going through the various stages of the disease. They encourage community involvement by having many types of activities and different fundraising events to help raise awareness and funds for research.

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?

2014

June 18, 2013

TSAlliance has been a great organization! I've actually been involved as a parent since 1979 when it was the National Tuberous Sclerosis Association and have benefitted from the support of the group in my various hometowns in California, Colorado and Virginia. They are a great group of hardworking staff, as well as a huge group of volunteers, who are committed to finding a cure for TSC. They are very involved with the social media network and reaching out to the community in every way they can, as well as trying all different ways to raise awareness about the disease and fundraise for research.

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?

Some

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

March 20, 2014

more


1 previous review
May 31, 2013

My son was born in March of 2012 and diagnosed hours after birth. We had never heard of TSC, yet our son was facing brain surgery. The first person I spoke with was the chair of the local alliance. I'... more

March 20, 2014

I have had the honor to become involved as a volunteer for my local chapter and to attend the annual March on Capitol Hill for funding. The Alliance gives us so much hope for the future of our children. It is a great resource for information and assistance.
May 31, 2013

My son was born in March of 2012 and diagnosed hours after birth. We had never heard of TSC, yet our son was facing brain surgery. The first person I spoke with was the chair of the local alliance. I've since become the chair and gone to DC with the alliance to seek funding. I'm so thankful there is a group seeking to better the lives of those with TSC and that gives me a chance to be involved. I have so much more hope for my son's future. -Becky Gaunt

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 19, 2014

more

March 19, 2014

The TS Alliance is wonderful!!! I have been involved with this organization for over 6 years, since my daughter was diagnosed. Without the help, support, education, understanding, and friendship provided by the TS Alliance, I honestly would have been lost. The Alliance supports families and friends, as well as provides information to any person associated with Tuberous Sclerosis - from educators to doctors. As my daughter grows and continues to face more challenges, I have continued to need guidance, education, and support. The TS Alliance has always been there to help.

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

June 4, 2013

more

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 3, 2013

more

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

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

Previous | 1 2 34 |
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