photo from http://phoenixvail.wordpress.com/2011/09/08/the-power-of-letterwriting/

For all affected by kernicterus and/or supporters of picK,

picK’s leadership recently spoke with Steve Shapiro and want to share what we’ve heard from him, AND get your help. Your voices are very powerful (more on that at the end)!

What is Steve up to?

Steve is once again applying for aPCORI grant (a US government grant that is focused on doctors and researchers PARTNERING with patient organizations like picK).  It was a bummer that the last application wasn’t approved, but it also provided very good feedback that may help him achieve success this time.  The feedback provided by reviewers (the people who vote on whether a project gets funded) all suggested that the research must be more focused.

Thus the decision has been made to focus upon:

1. A diagnostic toolkit for families to determine if they should have an evaluation for kernicterus or bilirubin induced neurological disorders (BIND) and for physicians and healthcare providers to make the diagnosis. We expect that this will allow for earlier identification and diagnosis of kernicterus, and we will be able to test if this is true. There are dozens of reasons why this is prudent, namely in helping to establish HOW OFTEN kernicterus is happening and to provide those living with proper treatment that can help optimize their futures.
2. A Kernicterus Registry. Only by knowing who has kernicterus, what type and how severe, can we begin to find what treatments can best help individuals with kernicterus. So we will argue that by establishing registry we can determine what treatments are being used and what ones families think are helpful, and then use this information and the new registry to evaluate current and future treatments that families and individuals want so we can have good answers to families as to what works.

Why this direction?

We all very much want to see viable TREATMENT options for our kids and PREVENTION (not having the problem of kernicterus in the first place), but as a long-term strategy and after speaking with higher-ups in healthcare, we realize that it is first fundamental that people understand that KERNICTERUS IS HAPPENING.  We all know that no one wants to put effort into preventing something that they think is mythical, and as much as we know that kernicterus happens much too often, the rest of the world doesn’t. They need numbers, and this is an important step in establishing those numbers and outlining exactly what kernicterus is and how to diagnose it.

The Letters

With that being said, what’s needed from picK parents is letters of support. These letters need to be FIRST AND FOREMOST ADDRESSING THE ISSUE OF EARLY DIAGNOSIS!

The PCORI reviewers were BLOWN AWAY by the letters we sent with the last grant but also felt like many families talked about how kernicterus needs to be prevented and less about diagnosis and treatment. This time, we know what to ask you for so here it is:

• 1 page or less
• Submitted by midnight January 13 (Please email to picKorg@gmail.com)
• International letters are welcomed and appreciated!
• Focused on:

• Support of Dr Steven M. Shapiro’sresearch
• How early diagnosis helped OR would have helped your child
• The importance of diagnosis (if you know you are dealing with KI, you can determine early if your child has hearing loss, and for kids with the motor piece you know in the critical EARLY months how essential tummy time is for kids with severe dystonia, to work on balance, know what specialists to see, meds to try, etc)
• How standards for diagnosis are beneficial (how your child is easily mistaken as having autism, spastic cp etc without dr.’s having the proper info to diagnose)
• How a Kernicterus Registry will permit future comparative studies of effective treatments that will make a big difference.

What will a PCORI grant mean?

These letters will be for the purpose of showing support for a kernicterus diagnosis kit and a kernicterus registry.  It will mean additional funds of almost 1 million dollars for the Kansas City Kernicterus Center at Children’s Mercy Hospital.  They will be actively coordinating with picK on this project and picK parents.  {As a side note, the KCKC has multiple projects and is expanding all the time.  They will continue to work toward better treatment options for our kids, and if anything this grant could amplify those efforts.}

We thank you very much for taking the time to support both picK and the efforts of Dr. Shapiro in helping to identify, treat, and stop kernicterus!!!! Your voices may feel faint, but they are by no means small.  We all have a very valuable perspective on kernicterus.  With our voices we can impact change for the better.  We can help our own children and the children of the future.  Thanks for your time and Happy New Year!

Susan, Miriam, Vicki, Kelly, and Kasey