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Susan McBrine

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National Tuberous Sclerosis Association Inc
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!

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?

2013

MY ROLE:
Volunteer

National Tuberous Sclerosis Association Inc
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 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!

More feedback

When was your last experience with this nonprofit?

2012

MY ROLE:
Volunteer