Date: 02/23/2022

Dear KID Syndrome Families,

We are excited to announce the beginning of a new KID research effort made possible with generous funding from FIRST member Patti Brennan.

This is the beginning of a multi-year effort. There are three things I wanted to share with you:

  1. We are looking for families to participate in a 90-minute, recorded virtual discussion about KID. This will be led by me, Denise, and we  will discuss living with KID. This is geared toward uncovering those first data points that scientists need for developing therapies for KID. There will be a questionnaire sent out ahead of time. 

Are you able to participate? Please go here and share your availability:

  1. We have decided to extend our National Conference financial aid deadline, just for KID patients and families! We really want to make it easy for you ALL to get together with us this June in Providence.

Please reply to this email if you are interested in applying.

  1. We have just opened this year’s research grant review process. We have noted there will be special consideration for investigations into KID syndrome.

I myself have ARCI-CIE ichthyosis, and when I was a kid we knew next to nothing about it. Just this year I had the thrill of participating in one of the first clinical trials of a drug just for this type.

For every skin type, we have to start somewhere. We are thrilled to be making these steps with you, this year.

Special thanks to the Brennan family, and big hugs to you all!

Denise Gass ? Director of Development

PO Box 1067 ? Lansdale, PA 19446

504.434.5325 p ? 504.722.3848 m


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