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To Members of the PI Community in the Houston Area

September 1, 2017

To Members of the PI Community in the Houston Area

We are absolutely heartbroken for all that your region has endured over the last several days, and for what is still to come.

As you might imagine, IDF’s ability to impact a crisis situation like this is limited. We have, however, reached out to medical professionals, therapy manufacturers, and others to help us better understand the challenges they are facing in case there are any areas where IDF can be helpful in the days to come.

For now, we can offer little more than words. And while I hesitate to offer advice in a situation like this, as someone living with a PI, I wanted to say something to my fellow patients, and to the parents who care for our young zebras. If I overstep, please forgive me.

Even under the best of circumstances, managing a PI can be challenging. We all want to live as “normal” a life as we can, and we can be hard on ourselves for not accomplishing everything that we want to accomplish. And that’s on a good day!

In an extraordinary time like this – there are going to be new stresses piled on top of the ones you were already dealing with. Just as our diagnoses are seen as “invisible illnesses,” we know that many of the challenges you face will be invisible too. As everyone moves toward recovery, not everyone around you will understand the challenges that you face.

We do, and we’re with you.

We know that you’re “Zebra Strong” and that you’ll get through this crisis the same way you’ve gotten through the others that you have faced.

If your situation changes and you need help identifying a new medical provider, or have questions about barriers in getting your therapy or medications, please contact our office at 800-296-4433 or We will continue to monitor the situation and stay in close contact with the medical professionals and therapy manufacturers in the region and do what we can, when we can.

John G. Boyle
President & CEO

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