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Amy_54

591 profile views
3 reviews

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

We would be so lost if it weren't for the Tuberous Sclerosis Alliance. The organization does an excellent job educating people affected with the disease and raising awareness with the general public. They have the most accurate information about the disease on their website, and most importantly, money raised through the organization has resulted in a medication that has drastically improved my little girl's life. Notice the improvement in her kidneys since being on Afinitor. The white blobs are cysts.

Role:  Volunteer
 

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

My daughter, Chloe, was diagnosed with tuberous sclerosis just before her 4th birthday, when she started having seizures. The doctors told us right away to visit the TS Alliance's website and said that is where we will find the most accurate information on the disease. If it weren't for the TS Alliance, I don't know where we would be today. If it weren't for all the money they raise that goes toward research, Chloe would probably be in a lot worse shape today, and I'm sure her life has been extended thanks to their hard work. We are thrilled to be able to raise as much money as we can for the alliance because we know it will benefit Chloe and others who have TS.

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?

2014

Role:  Client Served
 

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

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.

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

Role:  Volunteer