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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Specifically Named Diseases Research

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.

Programs: Dissemination of information regarding chromosome abnormalities to physicians and families, and funding research regarding chromosome 18 abnormalities

Community Stories

49 Stories from Volunteers, Donors & Supporters

Diane195

General Member of the Public

Rating: 5

I've connected with families that have the same abnormalities very helpful

1 Lee_59

General Member of the Public

Rating: 5

A fabulous organization made up of amazing people. We were welcomed like family and the service the chromosome 18 registry provides to those who need it is priceless. Thank you so much to the amazing team and all the volunteers.

1

Client Served

Rating: 5

The Chromosome 18 Society has provided great support and information since the birth of our daughter in 2011 and her diagnosis of trisomy 18. I have connected online with the Society and in Australia with the small number of families affected by chromosome 18 anomalies. I look forward to news of their conference in the USA and also the Australian conference in Australia held every 2 years. Fabulous support organisation.

1

Client Served

Rating: 5

From the first weeks of our son's life to present day, the Chromosome 18 Registry and Research Society has helped us cope with his diagnosis. I've been proud to fund raise for the organization knowing they run lean in their organization, focus the money spent on supporting families and research at the Univ. of Texas San Antonio Health Science Center's Chromosome 18 Clinical Research Center. Amazing organization well worth every penny of support.

2

General Member of the Public

Rating: 5

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!

3

Board Member

Rating: 5

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.

1

Donor

Rating: 5

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

1

Client Served

Rating: 5

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.

1

Professional with expertise in this field

Rating: 5

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.

1 crfugitt

Client Served

Rating: 5

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

Previous Stories
4

Client Served

Rating: 5

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