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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

59 Stories from Volunteers, Donors & Supporters

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.

2

Volunteer

Rating: 5

My son was diagnosed 18 years ago with 18q deletion. The doctors could tell us very little information on his diagnosis. I am so very thankful for the registry that helps support research in giving us answers & hope that we so desperately need. I am also grateful for the wonderful support we receive from other registry families

1

Client Served

Rating: 5

I discovered the Chromosome 18 Registry and Research Society in 1999 when my daughter was born with a chromosome 18 abnormality. The doctors and geneticist gave us a very bleak outlook for her life. The registry gave us a place to ask questions and vent about things we were going through with our children. It was very helpful to be able to ask other parents about behaviors and medical issues we were going through and they had already been through. The best thing is the annual conference. These are very rare abnormalities so to be able to meet other children and to be able to talk to other parents in person is awesome. They also do research on the chromosome 18 abnormalities which helps us and lets us know what issues to look out for. After talking with and meeting the doctors and parents from the Registry they gave us hope! Today my daughter is a 16 year old who loves life.

2

Client Served

Rating: 5

When we were scared and lost, we found The Registry. We are first time parents and our daughter was diagnosed with a rare chromosome abnormality. None of the doctors could tell us anything about it or what to expect. Thanks to The Registry, we've gotten good information, thorough information and information that makes us hopeful, not hopeless. We've been fortunate enough to attend a few of the family conferences and have made many friends with people who understand us and see more similarities than differences.

2

Client Served

Rating: 5

We joined the Registry in 2007, after our son was diagnosed with 18q-. Over the last 8 years we have been able to connect with so many other families that share our concerns. The Registry has enabled us to learn more about his disability and they were the first ones we turned to for information. This year I experienced my first Chromosome 18 Registry Conference and it was so amazing to be with such a large group of people who understood what my daily life is like. The Chromosome 18 Registry has truly been a blessing to our family.

2

Donor

Rating: 5

This group does amazing things with the funds and provides a safe and supportive environment for families and loved ones. It strives to make sure none of us feel alone on this journey and are always looking to improve the lives on the people affected by chromosome 18 changes. My family will be forever grateful for the staff and families!

2 Kim_192

Client Served

Rating: 5

It is very hard to find someone in Alaska with knowledge about 18p deletion syndrome.Love this nonprofit! Its been an amazing wealth of information on 18p deletion syndrome. The facebook page is also very helpful with getting information and feedback from other parents and adults with 18p. Looking forward to participated in one of their many events in the future.

1

Client Served

Rating: 5

The Chromosome 18 Registry has given has valuable tools and information to help our son reach his greatest potential. Without it we would feel very alone.

1 Laura255

Client Served

Rating: 5

There isn't enough time in the day or space in this little box to tell you all the amazing things the registry has done for me and my family. First and foremost, the family registry is a lifesaver. It connects hundreds of families who have a child or other family member who is affected with a chromosome 18 disorder. When you find out your child has this extremely rare genetic disorder, a disorder most doctors know nothing about you feel absolutely alone and isolated. The registry is a lifeline. I have received an unprecedented amount of support from other parents like me and I don't know if I would have gotten through the early years without them. I consider them my extended family all over the world. The Research Society is the only place in the world doing research on my daughters disorder. We have joined the clinical trial so that we can do our part to help. I am grateful for all the work that they do. My daughter will have a better life and a better future because of it.

2

Volunteer

Rating: 5

Our lives changed in 1999 when my daughter found The Chromosome 18 Registry and Research Society. She was carrying out research into the rare chromosome disorder which affects her, and discovered that there was a conference taking place 6 weeks later in San Antonio. It was a huge challenge to get there from Scotland, but it was worth every penny to find the place where Kathryn at last felt not only accepted, but celebrated. Attending the annual conference was very important to her, as it gave her the strength and self esteem boost she needed for the rest of her year at college. We learned what we should have checked, and ways to advocate for her, and how she could advocate for herself. It's such an important part of our lives that we helped set up the European organisation so that other affected families could gain access to our worldwide family for support and knowledge. Each year our affected children and adults learn laugh and play together, and we see them grow before our eyes at conference.

1 Fiona P.

General Member of the Public

Rating: 5

So grateful for finding this group as I have found and learnt lots of things. I have 18q at break point 22.3 and so do two of my children, so for me to do this is an achievement and hope it's ok. I have found friends and lots of info here, so thank you.

3 Susan402

Client Served

Rating: 5

When my daughter was born early we were not too concerned. Then, on day four of live we were given her diagnosis (her first of many) of Chromosome 18 p deletion syndrome. The specialist had not heard of it. This is very scary. Thankfully we had friends who found The Registry for us online. This was before FaceBook. The Registry offered information and vital support that have helped my daughter and whole family on this part of our journey. Without The Registry, we would be lost and alone. The Registry is our family. They help us inform doctors, therapists, educators, family, and friends. We are grateful and proud to be part of The Registry.

2

Client Served

Rating: 5

We were so lost when we got our daughter's diagnosis of 18q-, and the doctors that gave us the diagnosis were frank in that they didn't know a whole lot about it, so they could only give us the worst case scenario.
I'm grateful everyday we found The Chromosome 18 Registry because they gave us something we had very little of at the time, hope.
Connecting with other parents who had gone on the same road as us was priceless. Attending the conferences has been indescribable. The information we've obtained there has been invaluable and given us amazing tools in giving our daughter as normal of a life as possible.
I could never imagine a better organization as The Chromosome 18 Registry and Research Society, and my family is forever indebted to them for all they've done for us.