Largest cleft lip research effort ever.

 The Cleft Collective studies cleft lip and palate.

An almost $19 million dollar  program promises to have an important, maybe even global impact, on cleft lip and palate understanding and care. In fact, some scientists say this largest ever research program into clefts will bring huge benefit to cleft patients and their families around the world.

The program, launched in March 2012, is called The Cleft Collective ( Wouldn’t you know the words would be a tad different across the pond? And catch Her Royal Highness in the photo!)

Manchester and Bristol universities lead the program, in partnership with the U. of the West of England, the  NHS Foundation Trust, and the childrens research unit at the University of Liverpool.

Countess of Wessex watching expt at  Cleft Collective lab
HRH of Wessex visits Cleft Collective genetics lab

In Manchester (where I spent two sabatticals, in 2000 and 2007), researchers conduct clinical studies while in Bristol scientists supervise a cleft gene bank and cohort study.

A common malady.

Cleft lip and palate deffects are among the most common birth anomalies in the world, but darned if we know much about them. We know almost zip about their causation (etiology), and opinions vary about the best way to treat them. Logo of The Cleft Collective

Professor Bill Shaw, lead researcher for the Manchester team, says “[We’re working] to improve the treatments available and reduce the burden of care on children and their families.”

Acting Chief Executive of the Cleft Lip and Palate Association (CLAPA) Sue Carroll adds, “[T]his new and exciting research program…will provide huge insights into cleft lip and palate.” CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate.

Cleft Collective research will help answer three key questions that parents often ask:

1) What caused my child’s cleft?

2) What are the best treatments for my child?

3) Will my child be OK (both now and in the long-term)?

Regarding the last question, I wrote my memoir, Cleft Heart: Chasing Normal, in part to help answer this nagging question that often arises after most of the surgical intervention finishes around age 18. Besides providing a road map for parents anxious about the coming-of-age of their cleft kids, the book examines the goals and aspirations clefts have and the ways they may be pursued.

A strong argument  can be made, by the way, for more cleft care after age 18, something addressed in a recent blog.

Go here for more information about The Cleft Collective and email them at if you have questions. For regular updates, follow them on Twitter: @CleftCollective.

To learn about CLEFT HEART: Chasing Normal, click the Amazon or Barnes & Noble buttons in the margins. Or click the image of the book cover. My coming-of-age memoir has intertwining love stories, mystery, tragedy, and triumph.

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