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What is CDD?

Childhood Disintegrative Disorder is a rare autism spectrum disorder. After a period of normal development, a child regresses, typically around the age of three, and loses previously acquired skills. CDD devastates families emotionally, and often financially as well.

Read a touching story about a family impacted by CDD. The researchers this charity endeavors to support are interviewed in the article.

History of CDD Research

CDD Research was founded in March, 2016. David Jaap, CDD Research's founder, and three others have volunteered many hours to create this third vision of the site. To date, CDD Research has no full-time employees drawing a salary.

CDD Research is a unique charity, created for a unique cause by an eccentric individual who had an epiphany (see below). Originally, the charity was created to fund only research, however, after becoming aware of unmet needs through interacting with local CDD families, the mission statement was changed to include support.

Mission Statement

Childhood Disintegrative Disorder Research endeavors to support research and to offer support for CDD families.

How?

We are new. We do not yet have the funds to address our mission statement. CDD Research is currently being supported financially by the founder and by a few friends and family. CDD Research's efforts are currently focused on innovating and implementing strategies to raise money rapidly. We intend to support researchers at Yale University who are studying CDD. How we support families will be determined once funds become available.

Our goal is to raise one million dollars a year. Meeting this goal would allow us to fund the minimum amount needed to continue research, with some left over to begin supporting the needs of CDD families. CDD research is linked to a separate business called Gaanjō, LLC, but run by the same people. Gaanjō donates 25% of its after-tax profits directly to CDD Research. Our strategy is to use both direct fundraising through CDD Research (for example, raffles) and indirect fundraising through sales of Gaanjō's unique products.

Where?
GAL Coffee Cup

CDD Research's home office is located in the study of the founder's home in Rockwell, NC USA. Rockwell is a town with a population of about 2,100. The town recently added its third stoplight to main street.

Though the organization is based in the US, CDD does not recognize borders. CDD families are located worldwide. To facilitate research and obtain funding, CDD Research embraces a global perspective. We aspire to one day be able to offer support to CDD families around the world, but our initial focus will be on CDD families residing in the US.

Families with needs that are also participating in research will be given priority.

Why? Meet The Founder: David Jaap

As my children reached adulthood, my outlook on life changed. I noticed younger adults in my community when before I had not. I witnessed their struggles to deal with the challenges of life and it reminded me of my own struggles when I was young. My change in perspective may be due to my recently emptied nest. In any event, I found myself concerned about these much younger adults.

founderimage

Future Generations should have it better than I did – not worse. Things should be improving in my community, not degrading. Housing should be more affordable and of better quality, not the opposite. Life is not a game we can win. We will all die—what we leave behind is our collective legacy. I am not satisfied with the legacy I have created thus far. This was the state of mind I was in when I learned that a young child I had known since birth had been diagnosed with CDD.

Feeling a strong desire to help, I set out to learn all I could about CDD. What I learned broke my heart. This disorder is a nightmare for parents to endure and we can only imagine the hell their children go through. Trying to be a good parent can test the sanity of the most rational people at times. Maintaining complete sanity while your child disintegrates before your eyes is inconceivable. No parent should have to go through this. No child should ever endure this. Something switched inside my head—I could feel, actually feel it, when it happened. I do not accept CDD—it has no right to exist.

I’m invigorated with a new purpose—to help alleviate the suffering caused by CDD. There are many rationalizations I could have used to talk myself out of this seemingly impossible task: I am not equipped to do this, I am not smart enough, I lack the charm or charisma needed to be successful, my friends and family won’t understand me anymore… and on and on. I used to have access to these quite reasonable rationalizations, but I lost them, they are no longer available to me. As I said, something changed in me.

founderimage

Future Generations should have it better than I did – not worse. Things should be improving in my community, not degrading. Housing should be more affordable and of better quality, not the opposite. Life is not a game we can win. We will all die—what we leave behind is our collective legacy. I am not satisfied with the legacy I have created thus far. This was the state of mind I was in when I learned that a young child I had known since birth had been diagnosed with CDD.

Feeling a strong desire to help, I set out to learn all I could about CDD. What I learned broke my heart. This disorder is a nightmare for parents to endure and we can only imagine the hell their children go through. Trying to be a good parent can test the sanity of the most rational people at times. Maintaining complete sanity while your child disintegrates before your eyes is inconceivable. No parent should have to go through this. No child should ever endure this. Something switched inside my head—I could feel, actually feel it, when it happened. I do not accept CDD—it has no right to exist.

I’m invigorated with a new purpose—to help alleviate the suffering caused by CDD. There are many rationalizations I could have used to talk myself out of this seemingly impossible task: I am not equipped to do this, I am not smart enough, I lack the charm or charisma needed to be successful, my friends and family won’t understand me anymore… and on and on. I used to have access to these rationalizations, they are quite reasonable, but I lost them, they are no longer available to me. As I said, something changed in me.

I refuse to accept that CDD is being permitted to flourish, wreaking havoc on children and families at will. So, I promise to do my best to end this disorder’s ability to cause suffering.

I also promise that all donations will be well spent. I would trade a billion dollars and leave myself penniless in a second if it meant an end to the suffering caused by CDD.

Thank you, sincerely, for your help.

(Updated 10-9-2016, djaap)


I have included below (in no particular order and this list is not exhaustive) links to some books that have either profoundly influenced my thinking, I continue to find useful, or I enjoyed reading a great deal. I can think of a no more efficient method to give the reader insight into who I am than by sharing this list. The books by Douglass and Gibbon I view as the most important. If one endeavors to innovate a new method of social change, reading the books by these two authors is a prerequisite. The social machinery--the root cause that creates the effect--can be understood through reading the books by Douglass and Gibbon.