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Chromosome 18 Registry and Research Society

Rating: 5 stars   45 reviews 761

Address:

7155 Oakridge Drive San Antonio TX 78229 USA

Mission:

The Chromosome 18 Registry and Research Society, founded in 1990, is a lay advocacy organization composed primarily of the parents of children with one of the chromosome 18 abnormalities. We are also proud to count among our members, affected individuals, extended family members and professionals. Membership is open to any interested person. Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign. We provide: Newsletters, Annual Conference, Parent Network, Syndrome support groups, Regional support groups, Education, Syndrome information, Public advocacy. We fund research, including clinical research.

2016 Top-Rated Nonprofit
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More Info

210-657-4968
http://www.chromosome18.org

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Reviews for Chromosome 18 Registry and Research Society

Rating: 5 stars  

1 person found this review helpful

What a wonderful organization! What makes it so special is everyone is so committed to doing whatever it takes to make a difference. I had an opportunity to meet so many precious individuals who are affected by this rare disorder. They truly touched my heart!

My thanks to everyone who supports the Chromosome 18 Registry and Research Society!

 
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Rating: 5 stars  

2 people found this review helpful

We have been members since our daughter's diagnosis of Tetrasomy 18p in 2001. The Chromosome 18 Registry & Research Society offers family support, education & medical research for chromosome 18 conditions. We look forward to the annual family conference each year. This organization has made a difference in our lives, the life of our affected daughter & is part of our family.

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?

2016

 
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Rating: 5 stars  

The most remarkable result is the bonding of siblings of the affected persons over the years. They have been affected also.

 
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Rating: 5 stars  

Miraculously, i found a texas telephone number for the C18 reg. & research society 24 years ago when my son was born & diagnosed as having Chromosome18p-. This was pre- internet and nothing cd be found on the topic except for grim faces expressing grim outlooks based on few to no facts. Janine Cody founder of the c18 society answered the phone that day and changed our lives in one short phone call. herself a mother of a child with a partial 18 deletion, she knew her facts, and what blew my mind, was that she was very " unpaniked " about it all. Knowledge erases fear. Support nurtures growth. A sense of belonging brings joy. When our son was a baby & toddler we traveled far to attend the annual conferences. We loved it. It felt like family in the best sense of the word, chosen by birth not by other means, but a family who comes together to share and to learn and to enjoy. My son is a fine, happy adult now, no longer living at home, yet i still follow and support the Chromosome 18 registry in whatever way I can. I urge anyone with the means or desire to support a truly worthy non- profit organization to do so as well. Your help will serve to enable a foundation that not only directly and personally benefits children and their families but also contributes to scientific research that will increase our knowledge and understanding of genetics, a vital area of study that targets the greater good at home and in the world.

 
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Role: Professional with expertise in this field
Rating: 5 stars  

An incredibly dedicated team of scientists, physicians and support staff searching for cause, opportunities for life improvement and of course, cure or prevention. All the while they have created a network of care and support for individuals and families affected. Truly remarkable work.

 
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Rating: 5 stars  

The Chromosome 18 Registry and Research Society has been a vital part of our lives since our daughter Sarah was first diagnosed with a deletion on the q arm of the 18th chromosome when she was an infant. Shortly after that diagnosis, in 1992, we became aware of the Registry and quickly became involved to learn more about our daughter's condition and to try to determine what this meant for her life. Since that time, we have benefitted from the work of all of the wonderful people involved in this nonprofit - Sarah has participated in the Registry's research and we have had the pleasure of getting to know so many other families facing the same challenges we have had to face. The Registry has helped families from all over the world who have loved ones with a chromosome 18 condition and the research they have done into genes on the 18th chromosome helps not only those with a chromsome 18 condition, but extends to genetic disorders in general. We are so grateful for this wonderful organization. - The Fugitt Family

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

We discovered the Chromosome 18 Registry & Research Society after our daughter was diagnosed with Chromosome 18Q- at 9 months. Sarah is now 24 years old. The registry has been a life-saver in so many ways for our family. Through this group, with its vast network of people affected with chromosome 18 disorders all over the world, we are able to connect with other individuals and families who share our daughter's diagnosis so that we know we're not alone; we can share common issues and experiences. The Registry is constantly doing research, in which Sarah has participated, so that we are always learning about genetics in general and chromosome 18 issues in particular. As a group solely committed to issues involving chromosome 18, the Chromosome 18 Registry & Research Society is a vital resource for us and so many others around the globe who have been affected by abnormalities of the 18th chromosome. - Sarah Fugitt and family

 
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Rating: 5 stars  

A wonderful organization that supports all individuals that are affected in any way by a Chromosome 18 abnormalities.

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

With so few people affected with Chromosome 18 issues it is so wonderful that there is an organization that is dedicated to improving the lives of anyone with a Chromosome 18 issue. They do ground breaking research in areas that no one else is doing research and they strive to help our loved ones live healthy, happy and full lives.

 
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Rating: 5 stars  

Chromosome 18 Registry & Research Society has helped 1000's of families with education about Chromosome abnormalities along with strong national and regional support for families. They fund and support the leading research team in the World at the UT Health Science Center in San Antonio. This not for profit is a wonderful organization.

 
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Rating: 5 stars  

2 people found this review helpful

I am the 3rd oldest tetrasomy 18p known in the world! The chromosome 18 registry has helped me find the other 2 and I met one at a conference! I rely on the registry to help me find more people like me. The registry has an affiliation with a research center. Through this connection several papers have been published in peer reviewed medical journals which have helped my local medical team improve my quality of life. My care providers go to conferences with me. We all get the latest information and a great travel experience with others who really understand our journey.

 
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Rating: 5 stars  

1 person found this review helpful

Amazing group of people with an ambitious mission to make chromosome conditions treatable. A fantastic resource for new parents and the medical community.

 
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