As a parent of a child with an incredibly rare disease I just can’t say enough about chromosome 18 registry and research society. Just when you think there is no one else that can imagine what you’re going through your introduced to so many families that can support you and help you. I found this organization so incredible that I went from a client to now an active board member and I want to make my positive experience the same sort of experience that others can have. My daughter Charlotte was born with Tetrasomy 18p, a very rare genetic anomaly. But I have found such a wonderful extended family within the Chromosome 18 Registry group. Enough that I now fully support the organization through being a board member.
A wonderful organization that supports all individuals that are affected in any way by a Chromosome 18 abnormalities.
Chromosome 18 Registry and Research Society is an amazing organization. If you haven't already you should read their story on how they got started. So much love and determination goes into this research. I was honored to be able to volunteer at the 2017 conference in Illinois and interact with the affected individuals and their families. Such a wonderful down to earth and appreciative group of people.
Thank you Neale Parker for inviting me to volunteer. I hope to be able to do this again!
Chromosome 18 is an amazing organization that continually works to improve the lives of its members. Chromosome 18 provides support networks, events, and resources to families affected by chromosome 18 conditions. They also support the only research center in the world dedicated to chromosome 18 conditions. I am incredibly proud to support this organization and love being able to help our families!
Chromosome 18 Registry & Research Society is an incredible non-profit organization. They have helped so many people around the world for 26 years and continue to do so. I am glad that I get to be a part of this amazing organization.
Chromosome 18 Registry and Research Society is an amazing, compassionate, and dedicated non-profit. Everyone I have met is focused on the same mission, helping those affected by Chromosome 18 conditions. Coming together like a tight-knit family, the registry's members reach out to another when they need help and advice on next steps to take. Working at the non-profit has surrounded and introduced me to a community of philanthropy, positivity, and thoughtfulness. I can't imagine a better family to be a part of.
Chromosome 18 is an inspirational organization and I am glad to get to be a part of it. The amount of progress that Chromosome 18 alone has made in the field of chromosomal research is impeccable, and experiencing the warmness of members first-hand has been a great experience.
Chromosome 18 Registry and Research Society is an incredible nonprofit organization! The research they are conducting is beyond words. Everyone I have met from Chromosome 18 are all compassionate, caring, and determined to help in every way possible. It is an honor to be a part of this wonderful organization. I highly recommend touring their research facility. It is so amazing to see first hand what they are working on!
Everyone at Chromosome 18 is very welcoming and loving and caring. They have all become like a family to me. I have never been more proud to be a part of such a wonderful organization. They're doing so many great things for so many people and it's an amazing thing to be involved in.
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.
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.
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.
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!
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.
The most remarkable result is the bonding of siblings of the affected persons over the years. They have been affected also.
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.
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.
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
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
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.