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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

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

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

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.

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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?

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

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

Adrianne C. - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Adrianne C.

October 28, 2012
1 person found this review helpful

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October 28, 2012
1 person found this review helpful

I was struck to read the messages from the early years who are still committed to the larger community of families with tuberous sclerosis complex Over the past forty years his organization has demonstrated an unrelenting commitment to change the course of the hardships faced by us all. I will always be grateful to each and every family member, volunteer, friend, staff , physician, researcher and the community. Yes, I recall realizing when my daughter was diagnosed and I was faced with all the unknowns of our future, that I would need a community to help her and all of the families.

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

Maria51 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Maria51

October 28, 2012

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October 28, 2012

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!

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

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

tsclamvolunteer

October 27, 2012

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October 27, 2012

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

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

ccpitard

October 27, 2012

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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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