My Nonprofit Reviews

Over 50 years ago I was a young mom struggling to find hope for my baby with Tuberous sclerosis complex . There was no info or awareness then . So Together with three other moms , I found , we started this organization to fund research , spread awareness and provide hope and support .. today we have many TSC clinics , better treatments and are providing support and hope to thousands of families world wide living with the complex medical needs of this neurological disorder .
The fact that it is still in existence , educating the medical profession about TSC , and funding cutting edge research, Shows how important and effective it is .! The , now , tscalliance.org is providing life altering resources daily with love and professionalism !

I have seen this organization grow and thrive for 45 years as one of its founders and a parent of a now deceased child with tsc.. It is phenomenal and amazing to me that it has endured and has helped fund research and provide support to thousands of families ..internationally .Tnis organization is doing work that affects even more ..as those with autism and epilepsy also which are dual diagnosis of TSC in many cases . The leadership is excellent and the families who work to raise funds and awareness are the core that ensures it’s progress for all time .. I am passionate about this organization and know one day there will be a cure for TSC because of it .
It is educating millions about this disease and changing lives for the better every day

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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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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