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Susan McBrine - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Susan McBrine

April 5, 2013

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1 previous review
October 27, 2012

This organization is a Godsend for families to receive information,support, research and referral for drs who are familiar with the disease. I raised a daughter who suffered with this neurological di... more

April 5, 2013

I am a mother of a child with tuberous sclerosis who live to age 31' suffering from seizures, brain and kidney tumors, severe cognitive delay, behavior and sleep disorders and autism. Raising her was a struggle and finding medical and eduvational and social services a constant battle. This disease affects a whole family and community. I am a co founder of this orhanization , begun in the 70's to provide support, awareness and research to treat, and perhaps cure this disease. Today this organization reaches thousands daily all over the world, research has provided new genetic testing and drug treatments to prevent seizures and slow tumor growths. There are tsc clinics in several medical cienters in the usa helping families. Today tuberous wclerosis is not hopeless ! This organization provides a lifeline of hope for families struggling to help their child live with this disease which can present with one or 100 symptoms in a person. The research wevdo helps find ansers for aitism, epilepsy and other brain diseases. Other countries have chapters and reach out for help also.
It is a viable successful non profit which provides daily answers and advocacy for coping and treating .... And hopefully one day Curing!

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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?

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

October 27, 2012
1 person found this review helpful

This organization is a Godsend for families to receive information,support, research and referral for drs who are familiar with the disease. I raised a daughter who suffered with this neurological disorder and died because of the disease at age 31. I am also one of the founders of the organization about 40 years ago, when there was no research or support and very little information available. Due to the efforts of this well run organization, there is now a genetic test, new drugs and treatments for the brain and kidney tumors, seizures and resources for the behavior and developmental delays, etc which can occur . There are TSC clinics where families can go for a team approach to handle the many symptoms.- more and more doctors are now aware of the disorder and can refer families for help! This organization was a dream come true for me , my daughter and family, and now there is even a European branch . Now parents know they aren't alone in the battle and someday we may find a cure! I became a special education teacher and still advocate daily for families with tuberous sclerosis! I feel this organization gave my severely disabled daughter's life and death meaning!

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When was your last experience with this nonprofit?

2012

LEKfamily - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

LEKfamily

March 5, 2013

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March 5, 2013

Since our daughter was diagnosed with tsc at age 14 in 1993, the TS Alliance as provided our family with information and a caring support community. We are blessed to be able to give back to that community.

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Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

Jill33 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Jill33

November 12, 2012

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November 12, 2012

I have three kids, a husband, a sister in law and her two children, all with Tuberous Sclerosis. I do not know what I'd do without the Tuberous Sclerosis Alliance. I have been learning about TSC since my 16 year old was diagnosed in 1996. My husband, who has the condition, was diagnosed at the same time. Life has been a roller coaster of medical procedures, hospital stays, office visits, new medications, IEPs, and through it all, I could rely on the Tuberous Sclerosis Alliance to reassure me that I could and would meet the challenges this conditions presents, for my family. Stories of success and triumph and living with the condition as well as guidance in selecting everything from physicians to speech therapists, I found a resource! I cannot be more grateful to those who have done so very much for this organization, and as my kids grow older and they become less dependant, I hope to give back some of what has been freely and graciously given to me. Thanks TS Alliance!!!

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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?

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?

2012

mannybelle - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

mannybelle

November 4, 2012

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November 4, 2012

We have a 19 year old daughter, Marybelle diagnosed with TS at the early age of 2 weeks old due to the ash leaf spot seen on her back. Her doctor was so good that at this early age was cautious and keen in helping her prevent seizure. At 18 month old, she had her 1st seizure and that was the greatest challenge in our life. She was on different medications but only when she was six years old when we found out this organization through her school psychologist. So, we attended the convention in San Diego which educate us and realize more what we have to do and know about TS. Also, we attended the Chicago convention too. We educate and spread to my family and friends what TS means. Then, when the TS clinic in Oakland California opened, my daughter's neurologist recommended us to see this clinic. For 5 years, I supported the TSA walk they do until they stop organizing this event. It was too late for me to join the TSA walk this year but next year I will do it again for my daughter and to those people who are affected with TS. With all these 5 brain surgeries, 3 face laser surgeries, VNS implant and differnt anti-seizure medications we still don't lose hope that someday we will find cure for TS.

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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?

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

LucySushi - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

LucySushi

November 1, 2012

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November 1, 2012

My six year-old son was tentatively diagnosed with TSC in utero on what turned out to be the last day of my pregnancy, when a large tumor was found in his heart. To say that my world came crashing down is an understatement. My husband and I spent some time researching the disorder on the internet, and it soon became clear that the Tuberous Sclerosis Alliance was the only resource for clear, accurate and comprehensive information, from fact sheets to research articles to lists of TSC clinics to links to community support. I contacted the chair of my local chapter and within a few months had met several families in my area living with TSC, many of whom have since become a second family to me. In 2010, our local chair stepped down and I was given the honor of filling her role. The support that the TS Alliance is able to provide our community - from fundraising walks, online support groups, sibling support, government advocacy, research teleconferences and educational meetings - and all on a shoestring budget - is nothing short of astounding. Recently I was able to observe a board meeting, and I was truly impressed by the complete sincerity and utter commitment of its member to fulfilling the mission of the TS Alliance: finding a cure for tuberous sclerosis complex while improving the lives of those affected. In my opinion, the TS Alliance is the very model of what a rare disease organization ought to be.

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?

2012

John103 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

John103

October 31, 2012

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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

Laura88 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Laura88

October 30, 2012

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October 30, 2012

Our son was diagnosed 23 years ago, when little was known about this disease. We didn't have a gene marker (let alone 2) for the disease. We had no idea what the impact of the disease might be for our son. Most of the doctors we saw knew as little as (or less than) we did. The TS Alliance has been a long-standing source of expertise and advocacy for our son and our family. We have benefitted in many ways, the least of which is the Alliance's commitment to research and bringing new knowledge and expertise to this disease. We are forever grateful.

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

Amy_54 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Amy_54

October 29, 2012

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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.

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

901ted - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

901ted

October 29, 2012

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October 29, 2012

I have been associated with the Tuberous Sclerosis Alliance for 9 years. I joined because my grandson was diagnosed with the disease. I am now a Board member. I ave seen major improvements of this organization under the leadership of its Executive Director. We had to reorganize several times and had to relieve staff to achieve our goals. The Board works closely with the President/Executive Director to ensure our financial data is nothing but perfect. We have had to cut back at times on expenses to meet our budget. There is an aggressive fund raising effort as well as seeking foundation grants. I am pleased to see this organization constantly improve itself. it has offered advice to those families that have a child or an adult with TSC Theodore Mastroianni

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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?

2012

Michele28 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Michele28

October 29, 2012

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October 29, 2012

This organization was our saving grace when my daughter was diagnosed at 9 months old. Our daughter's first dr, told us the probable diagnosis and then told us not to research it on the internet, making it sound like there was no hope. I didn't listen to his advice and quickly found the TS Alliance which gave us hope for our daughter's future. The Alliance has provided us with guidance, community, the latest research, and most importantly hope. It has been our guiding light throughout our daughter's 11 years dealing with this condition.

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?

2012

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