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October 28, 2012
1 person found this review helpful

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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!

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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 28, 2012
1 person found this review helpful

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October 28, 2012
1 person found this review helpful

Without the TS Alliance (formerly NTSA), me and my husband would have been lost in fear and ignorance 15 years ago when my then 6 month old son was diagnosed. Never heard of this disease and felt completely alone, lost, afraid. They are there whenever we need them, so we are totally involved with their volunteer work as they need us. How great it is for us to have somewhere to turn for answers, community connections, people who walk in our shoes. I personally would not know what I would do without this organization!

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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?

2012

October 28, 2012

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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.

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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

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October 28, 2012

I was diagnosed with TS in my 20's nearly 20 years ago by a dermatologist in California. It was a bit scary as the dermatologist pulled together seemingly random birth marks and skin abnormalities then brought me a big medical book with a shocking pictures and information of disease in the book he said it looked like I had. I looked at the pictures and saw many images that looked like my skin, but worse, and other things that didn't. I also read that there were more serious symptoms like seizures, organ failure issues, and mental delays. We scheduled a scan of my brain and discovered I had calcified lesions which indicate there may have been issues as one point, but not anymore and at age 20+ most likely they would not become active again. I was just finishing college and moving from California to Texas and he told me to look up the Tuberous Sclerosis Alliance when I got there and I did. I discovered that TSA maintains an amazing website to help inform TSC individuals, their families, and their doctors understand the symptoms of the disease and the current screening recommendations based on top researchers. This has been very helpful to me as many doctors are not that familiar with TS and most of the time seem to pretend they know it, but you can sense they don't, and when they look it up in their books and other tools sometimes they have old information about what the best options for you are. I know this doesn't mean they are bad doctors, but it means that the information that TSA provides is critical to guiding your doctors to provide you with the best medical care they can. This is a key point for me, but TSA also offers much more, such as information on NIH studies for TS and TS related issues. I was part of a study once too and when I came home one of the people at the TSA found out I'd been there and told me how much she'd wished I'd told her as she would have come to visit me. That was when I realized that from the national to the local TSA was a family of people who really care. It has been a privilege and an honor to know and be part of this amazing group of people, and help in small ways by providing an example to TSA parents of the mild end of the spectrum of this disease, and to be part of sharing with other adults our experiences. I continue to see TSA as a key life raft that is big enough for everyone and open to anyone anytime and that is there for me whenever I need it and with real people on it ready to help me and others in any way they can. It is very special and thinking of it now I have a nagging worry that it is rare and not all people are lucky enough to have that kind of support.

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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?

2012

October 28, 2012

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October 28, 2012

The National Tuberous Sclerosis Association (aka, TS Alliance) is a wonderful organization. They have a wealth of information for families effected by TSC and those working with them. The people with the organization are incredibly helpful, friendly, and compassionate, and are more than willing to offer one-on-one assistance to families needing help in any area (medical info, educational advocacy, etc). The website, the Facebook group, the Inspire community forum, the magazine, the fundraising campaigns...every thing the TS Alliance does to reach out to the TS community is great!! Always on a personal level. The TS Alliance also plays an important role in research and in accrediting TS Clinics. My oldest daughter, almost 5 now, has TSC1, with cortical tubers on her brain & AMLs in her kidneys. She has fought the worst odds and always come out on top, and always kept a beautiful smile on her face. When my daughter was diagnosed at age 2.5yrs with TSC, our neurologist, as well as our family doctor, referred us immediately to the TS Alliance website for more information. We have used the fact sheets and other information many times over, in only the past 2.5yrs, and as we did this week when the kidney AMLs were discovered, and will continue to as our journey continues. We know that they are only a message or phone call away if we need assistance on a more personal level. We also know that they'll not let us down. Cannot say enough how incredibly important the TS Alliance is to us, and to so many!!

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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?

2012

October 27, 2012

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October 27, 2012

We found the TS Alliance a few days after our 5-month-old daughter received her diagnosis. It was so wonderful to speak with someone who could talk to us about the disease and gave us a chance to ask questions. The TS Alliance also put us in touch with the regional chapter in our area, which in turn connected us to a TS specialist and network that we did not have in our own state. This connection was life-changing for our daughter! The TS Alliance website is a wonderful resource and provides a wealth of information to parents like us as well as to docs and educators. They are an invaluable source of support...and most of all they give all us hope--hope because we know we are not alone in this journey.

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

October 27, 2012
1 person found this review helpful

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October 27, 2012
1 person found this review helpful

I was a board member of the Tuberous Sclerosis Alliance too, but I started and my heart remains with the dedicated volunteers who support the efforts of this Nonprofit. The Tuberous Sclerosis Alliance is a wonderful organization, led by dedicated and talented staff, but ultimately propelled the most by the dedicated volunteers who have served past and present. I have met so many wonderful people of all ages and involvements, whether they are an adult with TSC, a parent or a caregiver or friend of someone who lives with this illness. Not only are there successful fundraising events but there is a strong mentoring core that propel movement in research and government relations. I have received so much support through the thick and thin with my walk with TSC from so many in this organization at several different levels. But most of all I found it empowering I could learn, develop and grow as a person with the volunteer opportunities that I was offered. There is so much hope and positive momentum and I believe a lot of it comes from the partnership the organization maintains with its volunteers, but also the relationships they foster with researchers, government, and other organizations. We've seen real inroads through these efforts, and it all leads us back to the mission of the organization. A mission we all hold dear to our hearts no matter what role(s) we play at any one time. Quite impressive from an organization that just started with 4 mothers getting together trying to figure out ways they could help their children live the best quality of life possible with a sometimes cruel and relentless disease.

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?

Life-changing

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2011

October 27, 2012

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October 27, 2012

My daughter was diagnosed with Tuberous Sclerosis at age 8 months. Her pediatrician prognosis was grim. If it hadn't been for the Tuberous Sclerosis Alliance I'm not sure that my daughter who is now 19 would be with us today or not at least doing as well as she is doing. The organization has supported us emotional bring us together with other families locally and around the world for support. When my daughter was first diagnosed they could not control her seizures with any conventional medication available in the United States , the TS Alliance provided us contacts and information about treatments that had been very successful in Canada and Europe. We took our daughter to Canada and received the medication Sabril (vigabatrin) she was seizure free her first day. TSA was involved in the lobbying to make this drug available in the US. It is now FDA approved and is the first drug of choice for infantile spasm seizures. My daughter also has brain, kidney, facial and lung tumors TSA funds research in developing new drugs and treatments that are not only helping people with TS but people with autism and LAM. When I donate to TSA , I know I'm impacting lives.

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

October 27, 2012

more

October 27, 2012

My 21 year old daughter was diagnosed with Tuberous Sclerosis when she was 8 months old. In 1992, without the internet it was much more difficult to obtain information. I don't even remember how I discovered the National Tuberous Sclerosis Assoc., as is was called then, but what I do remember is the relief I felt in knowing that there were many others in our situation. I was quick to volunteer as a "state representative" and attended every educational and fundraising event as I possibly could. As the years have gone by, the organization has grown and their efforts don't stop. They fund research, provide family support, continue education and increase awareness. I am amazed at this wonderful group of people who continue tirelessly to raise funds so that families like ours can benefit. Thank you TS Alliance for all you have done for my family personally.

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

October 27, 2012

more

October 27, 2012

When I first heard the words Tuberous Sclerosis and was referred to the internet for my answers, I was devestated. I felt like my world had been turned upside down when two of my three children were diagnosed. So many unanswered questions that I needed answers for. Most doctors have only heard of it in med school and it is up to the parent to be educated on the subject. You soon learn that every website on the internet is not reliable. Once I found out about the Tuberous Sclerosis Alliance, it became my primary source for information because I knew that it was reliable. Additionaly it opened the doors for me to become a TS advocate that has allowed me to use my energy in a positive way by being a participant in the fight for a cure instead of sitting home and being mad. The TSA has provided me resources and support that I needed to make lemonade out out lemons. THANK YOU TSA FOR MAKING A HUGE DIFFERENCE FOR THOSE 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?

Life-changing

Did the organization use your time wisely?

Very Well

When was your last experience with this nonprofit?

2012

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