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Stephanie Langbein

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2 Reviews


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National Tuberous Sclerosis Association Inc
June 4, 2013

Thank you, Tuberous Sclerosis Association for all the guidance and support...... for my precious grandson, who is afflicted with TSC2. I am hopeful for a brighter future for these children!

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When was your last experience with this nonprofit?

2013

MY ROLE:
Donor

National Tuberous Sclerosis Association Inc
October 25, 2012

When my third grandson was born in July of 2011 with tumors in his heart, left eye and brain our family was not prepared for the diagnosis of Tuberous Sclerosis. Thanks to the TS Alliance we received excellent guidance and all our questions were answered. My sweet grandson was having trouble with the anti seizure drugs that were prescribed for him at birth. it seems that certain medications that prevent seizures in patients can do more harm than good for these children. TS Alliance was knowledgeable and guided us with the proper combination medications. Don't know where we would be without the help of TSC? Thank you National Tuberous Sclerosis Association for helping our children and their loved ones cope with this condition. Praying for a cure every day! Sincerely, Stephanie Langbein (grandmother to John Fitzmaurice)

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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

MY ROLE:
General Member of the Public