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KristenSE

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Chromosome 18 Registry and Research Society
January 11, 2013

My daughter has 18p-. This is a rare genetic condition that manifests itself with speech delay, social delay, low muscle tone, cognitive delay, short stature among many other issues. My husband and I found out this devestating news in 1999. We were very lucky to have found this non-profit right away. We found out that there isn't any other organization facilitating or performing research on this condition. We also received help from many other families who have travelled our path. Soon we made many friends who we now consider part of our family!

I got involved on the board of this organization because I love how it is run. The President and founder of the organization is a mom who went back to school for a doctorate in genetics when her daughter was born with this abnormality. The office is in the basement of her home. Every available dollar is used for research and education for families. The board works extremely well together, is very frugal and forward thinking! I am proud to be a part of this organization!

More feedback

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Board Member