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October 26, 2012

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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

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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

October 26, 2012

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October 26, 2012

As a volunteer for the Tuberous Sclerosis Alliance, an organization dedicated to finding a cure for tuberous sclerosis complex (TSC), I have had the honor of seeing the community come together for this cause. The organization give those who have been affected by TSC countless resources, support, hope and progress. I believe that TS Alliance is 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?

Some

Did the organization use your time wisely?

Very Well

When was your last experience with this nonprofit?

2011

October 26, 2012

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October 26, 2012

As an adult with a mild case of TSC also serving on the board, I am truly amazed at how effective this dedicated group of staff and volunteers is in interacting with its community, researchers and politicians. That such a group has fostered relationships that have led to several FDA approved treatments to help those impacted is beyond remarkable. To think that I had never met another person with TSC until I was 30 and now some nearly 15 years later I can go to my doctor to get a presciption for my TSC indication is a possibility I never envisioned, not to mention to those countless parents who also have choices to improve the lives ot their children. I am so proud to be affiliated with this group also known as the Tuberous Sclerosis Alliance.

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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

October 26, 2012

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October 26, 2012

When my daughter was 5 months old she began having seizures. After many tests and days in the hospital she was diagnosed with tuberous sclerosis. My husband and I were devastated! The doctors gave us the facts and they we grim to say the least. Thank God we found the National Tuberous Sclerosis Association. They gave us help support and most of all hope! Today our daughter is 12 years old and doing fantastic!

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

October 26, 2012

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October 26, 2012

I discovered bumps on my fingers when I was 4. I knew I was different and as the bumps (tumors) spread to my feet and then I started to get small bumps on my face, I knew I really was different. In my mid 20's, I went to a dermatologist who got a group of doctors together and said those words I'll never forget: Tuberous Sclerosis! I went to Scripps Medical Library in La Jolla,CA and this little tiny book said I should be retarded and would die at 33 and all sorts of scary outcomes. It was at this time, I contacted a doctor in LA who specialized in it and she had never met someone with TSC who had a job, drove a car and lived alone. She said I had a mild case. I moved to Seattle and met my first group of TS people and saw the varying degrees of cases! I was scared to death! Through the efforts of these first people to my testings at NIH, I discovered that TS was way more prevalent than I originally thought. I have since met my peers and the president (Kari) and traveled to Washington and I send out letters for politicians to help us find a cure. I am 56, have 5 tumors in my brain, my fingers & toes and my kidney has a tumor. I also have tests (MRIs, etc) every year to stay on top of my condition. I am so confident that TS Alliance is one of the best non-profits ever and that the work they are doing for all of us, from newborns to my age has made life more tolerable and by sharing this information with other sufferers has brought me close to people around the world. I am always willing to share my story especially with newly discovered cases in babies, talking with their parents and I am proud of the TS Alliance for being there for me all these years. Thank you. Lisa Bennett

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

October 26, 2012

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October 26, 2012

When I was 40 weeks pregnant, my doctor ordered an ultrasound to determine how large the baby was. During that ultrasound, the technician uncovered a heart tumor (Rhabdomyoma). I was told Tuberous Sclerosis was a possibility. The prognosis I received was horrible and wrong. Thank goodness I found the TS Alliance with the most accurate and up-to-date information. Upon birth our son was diagnosed with TSC. He will be 16 in December and he is a sweet, intelligent, respectful and handsome child. We are so lucky to have found someone to give us information and hope!

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

October 26, 2012

more

October 26, 2012

I am proud to be a volunteer for the Tuberous Sclerosis Alliance, an organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. Even though my sister Ronda is no longer with us, I believe, in my lifetime, we will see a cure for TSC!

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

October 26, 2012

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October 26, 2012

My son was diagnosed with TSC at age 9 months, 16 years ago this month. At first we were devastated but with the help of the NTSA we realized that this was not the end of the world. WIth the help of the group we learned about this disease and were connected to some wonderful resources. I volunteered to help with their newsletter for a while, as they were transitioning to a better one. I also am a community resource for anyone in my area who is diagnosed with this disease.

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

October 26, 2012

more

October 26, 2012

Our son was diagnosed on his 1st birthday.... 25 years ago. The physicians knew little and the materials they provided were outdated and factually incorrect. We very early on connected with what was then known as the National Tuberous Sclerosis Association. Through NTSA which is now known as The Tuberous Sclerosis Alliance, we gained access to the most current research, physicians specializing in the treatment of the many manifestations of TS, and joined a family of others who live with Tuberous Sclerosis in their lives. This condition impacts multiple body organs and systems, has physical, psychological, emotional, behavioral, and cognitive impacts -- and often those impacts are severe. One of the greatest benefits of the TS Alliance is their local conferences. Families do not need to travel hundreds/thousands of miles, spend significant dollars on hotels and meals, and arrange child care for a child (children)(for whom this can be an extremely difficult undertaking) to hear and meet with some of the leading researchers and clinicians in the country. Without the benefits and assistance from the Tuberous Sclerosis Alliance, I and many of the people I now know as friends would not be able to face the daily challenges brought on by Tuberous Sclerosis.

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

October 26, 2012
1 person found this review helpful

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October 26, 2012
1 person found this review helpful

I sincerly dont know where my family would be without the TSA!! The support that weve recived has been never ending. When my then one year old son Alex was diaqnosed, we were thrown into a dark tunnel of fear and confussion of the unknown, let alone what this TSC even was. And less than two weeks later I was DX and then my world was changed upside down and forever. But then we found the Alliance, and what was the beginning of great experiance with what we call our second family. The alliance has opened up the opportunity for me to step up and use my experiance to reach out and share not only what TSC is but how those effected with TSC can live and have a qaulity of life unlike they probably never seemed possible giving the various manifestations that TSC offers to those who are effected by it. I will be forever gratefull to be part of such a loving, compassionate and vital 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?

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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