Chromosome 18 Registry and Research Society

This is the best charity I've ever volunteered for! Everyone works so hard to make sure people are getting the information they need to live their lives to the fullest! The past couple of years have been tough, but, they keep on pushing. New members. Virtual events. Outdoor events. They are rock stars!

This is an outstanding organization because it helps those with this chromosome 18 to live a more normal and productive life. They also have a clinical research center in San Antonio to help benefit families that are affected by Chromosome 18. We have enjoyed supporting them and look forward to continuing to do so.

This charity is so important to so many individuals throughout the Country, comprised of young individuals and their parents that could not believe the depths of this organization.
It was established for the sole purpose of networking the special people to provide resources, encouragement and hope. Truly a Godsend for many.

The impact this nonprofit has had on those in need demonstrated a very high level of professional acumen in delivering needed service in San Antonio

Chromosome 18 is an amazing organization that continually works to improve the lives of its members. I love how much support this organization gives to their members and how they stay connected with families by providing resources, up-to-date research, global connection opportunities, and fun virtual & in person events. Chromosome 18 also has the only research center in the world dedicated to chromosome 18 conditions. I am incredibly proud to support this organization and I love being able to help our families!

We truly admire the dedication of the Chromosome 18 Registry and Research Society! They help a very specific group of children, and their families, to engage with other families, share their stories, and support each other. They provide resources and a wealth of content to help educate the community and build awareness, while also hosting events to raise money for research. They are making a difference and an impact, and we love supporting their mission for that very reason!
Donna & Randy H.

I have been involved with this organization for five years and they do amazing things for families dealing with Chromosome 18 abnormalities. They are the only lifeline for parents who find out that their child is born with a Chromosome 18 abnormality. They are a small but mighty organization. Please consider getting involved with this organization either by donation or volunteering for one of their events. It is a very rewarding experience!

Great experience and many wonderful programs that help our family

Chromosome 18 does amazing work for both the San Antonio community and the global community of chromosome 18 families. They help reach families after they receive a new chromosome 18 diagnosis, and also put on virtual and in-person events to connect families to the research happening at UT Health, and to one another. Chromosome 18 helps to provide resources and education, along with building community among those effected by rare chromosome 18 conditions. Their Starfish Dash 5K Run/Walk is a great free community event during Fiesta and gives the San Antonio community the chance to support chromosome 18 families and run for a good cause!

Have had nothing but a wonderful experience with this devoted organization to help Chromosome 18 families

I was grateful enough to intern for Chromosome 18 as a grant writer in the summer during my college education. I was overwhelmed and anxious about how I could be of any value to their team. Neale, Emi, and Dr. Cody are amazing people that made me feel right and at home and are 100% committed to what they do. I believe Chromosome 18 is one of the best non-profits in San Antonio after seeing how hard their team works, and how grateful they were to me during my internship.

While their mission is to build community, expand education, and advance research, they also provide hope and awareness.

Interning with Chromosome 18 was such an amazing and valuable experience! The staff was more than kind and accepting towards all interns, volunteers, and donors, and I got to see firsthand how much they care for their Chromosome 18 families. It was an honor to be part of such as impactful organization and to support Chromosome 18's events.

While working over the summer with Chromosome 18 I learned the importance of detail work that goes into an efficient non-profit. The work atmosphere was always positive and the I could tell that the staff really cared for all interns and volunteers. It was an honor being part of the Chromosome 18 team and aiding in getting connected with / getting important information to the many ways families the organization helps across the country and world!

If you are looking to get your foot in the nonprofit world, this is definitely the place for you! Great training, stress free office setting(currently remote) and very rewarding work.

It is such a great and wonderful experience to work with Chromosome 18. The manager was patient to all volunteers and workers. And the organization has great goals. What they do is meaningful. Hope more people would like to join them and help people in need.

I interned here over the summer of 2020 and wow- what an amazing group of people to work with! The team at C18 works tirelessly to help families in need, especially during this crazy pandemic. Their hard work and caring nature has proven their amazing ability to help families in need.

I have volunteered at some of the Chromosome 18 conferences. I’ve helped in the office. I was honored and blessed to work with some of the kids at last years conference. This group is exceptional. The research they do and the information that they provide helps so many, and provides them with the tools to live life to the fullest.

The Registry became an instant family and the greatest resource for us when we got my daughter's diagnosis. It's been so important and beneficial for us to connect with others through the Registry that I became a regional coordinator to help facilitate that benefit to others! I don't know where we would be without the Chromosome 18 Registry and Research Society!

Impressive organization started by a mom who couldn't find what she needed to care for her child, so she built it herself. Celebrating 30 years of making a difference for all children impacted by chromosome 18 abnormalities.

The work done and help provided by the C-18 Registry and Research Society is immeasurable.
Government loves to fund the big charities, but it's the hard work done by a small group of dedicated people that brings the necessary funding in to provide the help for those in need and the research required to find a cure.

This is a great organization and it is wonderful to see how much they support and encourage the very special and precious individuals and their families. From conducting research to improve the quality of their lives to providing education to them, their families and their medical care givers. Chromosome 18, thank you for all you do!

Proud to be helping our Chromosome 18 Families during this crisis and excited of everything the organization is accomplishing. The dedicated team is an inspiration every day in the new and helpful ways of being able to serve our members. Thank You to you everybody that helps so much every day. Congratulations on your 30th Anniversary in 2020.

Chromosome 18 Registry is doing more to help families during the Covid-19 crisis than ever before and we thank them for everything they do.

Chromosome 28 is a wonderful organization that is truly dedicated to their mission. I have never seen harder working people than those at Chromosome 18. One of the best nonprofits to work with.

What a great organization! They have top notch fundraising, use their funds extremely well, and engage effectively with their community.

This organization has greatly served the needs of families with individuals affected with these rare conditions. The research that it supports is truly on the leading edge. The sense of community that has been created is unmatched. Finally, the education of families and physicians with practical informal to help manage these conditions cannot be found anywhere else. I highly recommend this organization.

I am amazed at the story of how Chromosome 18 research was founded. I have volunteered several times for conferences and done a walk in San Antonio. This year the conference is in Colorado where I live and I will be helping out there.
The dedication of the employees, volunteers and families with affected children is heartwarming ������❤️

I have been a part of the Chromosome 18 family for 2 years now, and I am so happy to be part of an organization that is dedicated to improving the lives of so many individuals around the world. Chromosome 18 works to support families through sharing resources, hosting events, and funding essential research on chromosome 18 conditions.

I have been a part of this organization for almost 2 years now. Their dedication to their members and families is outstanding!The staff and volunteers are all such caring people. I am honored to be a part of such a wonderful organization that is always striving to be better. It is truly amazing to see the amount of lives that Chromosome 18 has changed with their research!

My son was diagnosed with a C18 deletion at 19 months. The Chromosome 18 Registry and Research Society has been a lifesaver for us--literally. When my son went into congestive heart failure at age 3.5, we knew from the other parents what needed to be done to treat him. He's now nearly 14, and hasn't been under a cardiologist's care for 9 years! We love the Registry!

I cannot even begin to describe what a great organization this is. They have helped our family and so many families so much.

What this small group gets done with the small budget they have is truly amazing. I can only imagine what could be achieved if they were able to get more funding for more programs and research. Not only would people with Chromosome 18 conditions benefit, but much of their work is applicable to other general conditions as well.

From the staff, to the volunteers to the other families - thank you for your support over the years!

Jeff

This charity has been a life saver for my daughter and the whole family. When she was first diagnosed with 18q- we were given outdated information that only showed the most affected individuals. Not one doctor in our area knew about her syndrome. We called the Registry and I talked with Dr. Cody herself for a long time getting up to date information, research and support. We attended our first summer family conference when my daughter was 3 months old and have made trying to attend a priority ever since.
Because of all the information and support that we got right away, I started volunteering with this great charity. I have volunteered in some capacity for almost 19 years.

Chromosome 18 Registry was their for my family and I when our daughter Charlotte was diagnosed. They have continued to be a major educator and central meeting spot for families to seek solace and hope. A great Non Profit!

Neale does a great job for this organization and has helped bring attention to much needed society

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!
Helene Benbrook

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.

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.

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

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!

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.

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.

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!

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!

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

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.

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

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

When our daughter was diagnosed the only people that really knew anything
About her genetic anomaly was the Chromosome 18 Registy and Research organization.
There we are not alone. There we get to meet other families who live with this on a day to day
Basis as we do. And as for treatments...., the only way there will ever be a treatment for the syndrome
My daughter has will come from the Chromodome 18 Registry and Research Organization. We went to
The conference this year and it was supportive and informative as well as fun. Literally these people
Are some of the only people that can empathize how you are feeling. An excellent organization.

I have been a volunteer for this organization for 7 years now and it gets better every year!

Every summer, they have a family conference that is nothing short of awesome! We live in a time of high technology this and high definition that, but there is no technology out there that compares to the friendships you make and the personal one on one relationships that you get to witness one on one!

I still remember being blown away watching the siblings in the first 2 hours of my first conference knowing that they are gonna grow up to be some of the most empathetic and compassionate adults you would ever want to know and after 7 years, I am here to tell you that I was correct!!!

A few weeks ago, we attended our third Family Conference. It's so nice to be able to meet others face-to-face that are walking the same path! The Registry has given us much needed support and guidance and introduced us to many wonderful families. We have participated in the ongoing research because we know it will help others who will travel this path in the future. The work done by Research Society helps not only those of us affected by Chromosome 18 variations but can help innumerable others, as well, because understanding what genes do, is important to everyone.

My daughter was not diagnosed with 18p- syndrome until she was 6 1/2 years old. After the diagnosis, there was no support and very little information provided by the local medical community due to the rarity of the disorder. When I found the Chromosome 18 Registry and Research Society I finally was provided with information, understanding, guidance, and support. There are no guidebooks for parents who are raising children with chromosome 18 abnormalities. The Registry fills this void by conducting research and studies on health and behavioral issues of its affected members. Registry leadership stays in touch with its membership and is on the cutting edge of genetic research designed to improve the lives of those impacted by this disorder. After feeling totally isolated and alone for almost 4 years following my daughter's diagnosis, I was finally able to speak with medical professionals and other parents who readily shared their knowledge and experience with me. The Registry won't make the national news like nonprofits who assist with disaster recovery or homeless prevention but their work is just as important because they are enhancing the lives of countless individuals and perhaps one day their research will result in the eradication of chromosome abnormalities.

The Chromosome 18 Registry is a genuine grass roots organization that has been supporting our family in many ways for almost 20 years. They are our number 1 source for medical information and research and have become the support network we turn to when we need another family with which to talk.

the registry has been with us since the beginning and has always been a great resource and brought us much comfort. We have attended many conferences and made many friends. This rare disorder can leave you feeling alone and confused and the other families really help you feel normal. Here it ok to be us.

We were devastated receiving our baby girl's dx of 18p-.....our geneticist was not all that familiar with the sydrome but recommended that we contact the Chrom 18 Registry. Almost 12 years later they are still our #1 place for information about our daughter's syndrome and for support. Love this org !

I have volunteered for several years, helping with the annual golf tournament, the annual family conference, and with smaller projects to help wherever I could be of service. This organization is a blessing to the many worldwide families it serves. It is a lighthouse in a storm of confusion and anxiety when a parent receives a diagnosis involving a Chromosome 18 anomaly in their child. More important, they are a strong support group consisting of doctors, researchers, parents, affected adults and children, relatives, and the community that strive together to educate themselves and others in their communities, and find ways to help those affected lead lives to their full potential. This organization exists on a shoestring budget, yet is doing so many amazing and wonderful things in supporting their members and making strides in research.

My son was diagnosed with a chromosome 18q abnormality almost 3 years ago. At 5 years old, he's doing much more than anyone ever expected him to be. He's writing his own book - and with the amazing help and efforts from the Chromosome 18 Registry and Research Society, we are able to help him grow, learn, and become the strong little man he's intended to be.
We attended the our first Ch18 conference this last summer and felt very welcome. Since then, I've been in contact with the Ch18 team for medical advice I've needed as we're looking at more surgeries. The doctors and professionals on and supporting the team and board are absolutely amazing!!! I don't know what I would have done had there not been a place to go to help me with those answers...because they seem to have them all! THANK YOU!

Chromosome 18 is such an awesome organization that the long days and hard work just fly by and it doesn't seem like hard work at all. I believe the reason why is that when we get together as a group-whether its for the annual conference or the annual golf tournament-everybody benefits. The parents with the newly diagnosed babies find a new family of parents that have been where they are and as such, form lifelong friendships. The kids and adults that have the chromosome differences meet peoplei in all stages of life that they can look up to and mentor. The siblings find other siblings with the same issues related to having a sibling with a chromosome abnormality. The caregivers,cousins,grand parents,aunts and uncles and the adoptive parents all benefit because The Chromosome 18 Registry and Research Society is a family! In fact, 'We Are Family' is our theme song.

The C18 registry is like a family! All of the kids have grown up together, members have gotten married after meeting at the annual conferences, lifelong friendships and connections have been made, and our families are great!

Almost 16 years ago, I had my second child, a daughter. She was born with some heart abnormalities, foot deformities, and a cleft palate. At just 6 days old, we were given a diagnosis of 18q-.
The diagnosis itself was scary, but how we were told, the outdated Xeroxed papers we were given and the lack of anything positive from the doctor was beyond scary!
Fortunately for my husband and myself, my father found The Chromosome 18 Registry & Research Society online. He gave me the number, which I called one night and actually got an answer. Dr. Jannine Cody, president and founder, answered my call and talked to me for at least an hour. That hour changed our outlook on this diagnosis.
Within 3 months of our daughters birth, we attended our first family conference held by The Registry every summer. IT WAS AMAZING! We were instantly swarmed by a group of young girls, all affected with a chromosome 18 anomaly, to see our baby. The first things I noticed, these young girls were happy and were obviously good friends. The parents of these girls took us in and made us feel welcome. In fact, the whole time we were at conference I felt that we were at a family reunion. Even though we had just meet these people. The sessions available to families were a great support and educational, but the real learning was bonding with the families and the board members of the Registry!
We have made it a priority to attend these summer conferences as a family. What is great about the Registry is that as it grows and the needs of the members change and grow, they change and grow with them. For being a World Wide Registry, it feels like family.

My daughter Cassandra was diagnosed with a rare deletion from her 18th chromosome at 1 1/1 years of age and there was was very little information or outcomes available to me as to what the future would hold. At the time, only 4 children were clinically diagnosed with the same deletion my daughter has and we were told life expectancy was approx. 18-19 years of age as that was the highest age recorded in the medical journals 28 years ago. I was 19 years old when Cassie was diagnosed so to hear the little hope for her future was extremely difficult and we started the process of having yearly exams and updates with the March of Dimes genetic clinic here in Alaska to help future children/parents diagnosed have more information available to them. When Cassie was 17, I came across a website designated for all disorders of the 18th chromosome "The Chromosome 18 Registry and Research Society". There were articles and other cases with Cassie's rare deletion and it felt like a huge door had been opened to us with recent research and new information and findings of how well these children/young adults were doing! I immediatly signed up with the Chromosome 18 Registry and was connected to a few other parents via email and phone to exchange information with one another and I can't tell you how profound and reassuring this was and is! We now currently have a FB page and so many others who's children have been diagnosed asking other parents for help, encouragment and tricks and tips which helps all of us and our children reach higher ground with what others have gone through. Thank you to all of the board/directors and staff who dedicate their time to helping these special children and parents find their way to the latest and greatest updates and research data!

Kim Rodrguez
Mom to Cassie Gibbs 18q- 29 years old
Anchorage, AK
krodriguez@gci.net

My daughter has 18p-. This is a rare genetic condition that manifests itself with speech delay, social delay, low muscle tone, cognitive delay, short stature among many other issues. My husband and I found out this devestating news in 1999. We were very lucky to have found this non-profit right away. We found out that there isn't any other organization facilitating or performing research on this condition. We also received help from many other families who have travelled our path. Soon we made many friends who we now consider part of our family!

I got involved on the board of this organization because I love how it is run. The President and founder of the organization is a mom who went back to school for a doctorate in genetics when her daughter was born with this abnormality. The office is in the basement of her home. Every available dollar is used for research and education for families. The board works extremely well together, is very frugal and forward thinking! I am proud to be a part of this organization!