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Chromosome 18 Registry and Research Society

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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

50 Stories from Volunteers, Donors & Supporters

Andrea D.2

Volunteer

Rating: 5

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.

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

Client Served

Rating: 5

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

Previous Stories
3

Client Served

Rating: 5

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.

nealeparker

Donor

Rating: 5

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.

2

Client Served

Rating: 5

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.

1 Dave90

Donor

Rating: 5

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

1 Todd45

Professional with expertise in this field

Rating: 5

This nonprofit works on a shoestring and is very up front about that. It is making amazing strides in a small subset of abnormalities. Great organization and getting better. The people involved are awesome and want to get the word out concerning chromosomal abnormalities.

3 Patricia154

Client Served

Rating: 5

My daughter has 18p- syndrome> She is now 36 years old. When we got her diagnosis there was no information to be had only bleak pictures and a lot of "we don't know" We started the process of wading through several doctors and special education by trial and error and making, hopefully, the best decisions we could at the time. We went on like this for years. We found out years later about the 18 Chromosome registry, but by then I thought been there done that what could they help us with now? Well now I understand how wrong I was! My daughter and I attended our first conference this year and I was overwhelmed by the amount of information and the comradery between the staff and families It made me cry thinking how alone I felt at times. But now I know their is always learning to be had and shared and friendships to be made. I'm so thankful for this organization that new families don't have to do this alone and now I don't either. I celebrate my daughter's uniqueness and 18 Chromosome Registry for sharing that uniqueness with the world!

2 Julie226

Donor

Rating: 5

Once our diagnosis was given doctors couldn't give us much info. We sere he'd the internet and got connected. To the chromosome 18 website! Right away we felt to ease because we were able to see what other kids with this abnormality had and we could compare our daughter and try to figure out the next step for us. Our individual group 18 P minus has been a godsend to our family! We have made connections with others and have been able to talk in a private setting with other parents to see where they are and where they been and use that knowledge to help us navigate the road in front of us!

2

Volunteer

Rating: 5

I have been involved with the chromosome 18 registry for many of year. This organization is more than just help it's my family. I always enjoy reconnecting with my friends and doing activities with them. I just wanted to say thank to the chromosome 18 registry for allowing us to be who we are. Thanks

2 Writer

General Member of the Public

Rating: 5

Meeting people and gaining access to valuable information through the Chromosome 18 Registry and Research Society has been such a blessing for our family. After 13 years without a diagnosis, we finally found out our daughter has Chromosome 18 p-. We didn't know what that meant but thanks to the registry, we have gained so much valuable information and have made connections with other parents that will hopefully last a lifetime. This summer we attended our first, but definitely not last, annual family conference. It was an amazing experience for our entire family and we can't wait to go to another one. Without the Chromosome 18 Registry and Research Society we would still feel lost and helpless. Now we have hope for what the future holds for our daughter.