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October 16, 2013

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October 16, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Ensure adequate funding for their numerous research projects.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 15, 2013

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October 15, 2013

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

October 15, 2013

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October 15, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

have the conferences more often and closer to my house.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 15, 2013

more

October 15, 2013

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 !

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 14, 2013

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October 14, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Figure out how to get it to the top of the list for government grants or other significant sources of funding for their research projects.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 14, 2013

more

October 14, 2013

We were introduced to The Registry a little over 4-years ago. Shortly after our daughter was born, we learned she had a chromosome variation called Ring 18. At the time, we were told there were about 250 known cases in the world. To say we were overwhelmed, is an understatement.

Fortunately, our geneticist put us in touch with the Chromosome 18 Registry and Research Society. We were given HOPE for our daughter and her future. It’s not easy raising a child with complex medical needs and “designer genes”. We found support and education from The Registry and comfort and friendship from the Chromosome 18 families that walk this road with us.

Ways to make it better...

If I had to make changes to this organization, I would...

give them more funding to help raise awareness. Chromosome 18 variations may not effect as many people as other conditions but the research done at The Chromosome 18 Registry can help others by determining which genes are responsible for different conditions.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

October 14, 2013

more

October 14, 2013

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!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 14, 2013

more

October 14, 2013

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.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 14, 2013

more

October 14, 2013

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!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 13, 2013

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October 13, 2013

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.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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