April 18, 2012 >> back to issue

Things I Found on PHA's Website: Notes of Thanks and Remembrance

This week I found something on the PHA website that is very near and dear to my heart: Notes of Thanks and Remembrance, published in PHA's International PH Conference and Scientific Sessions Program Book.

In spring of 2010 I received an email from a young woman who was at the time living so far away from her dad, she would not be able to attend Conference with him. She wrote to me to ask that I find a way to get a message to him at Conference, that she was thinking about him and was proud of him. I thought a Note of Thanks and Remembrance would be exactly right, and she agreed.

And so when Earl attended Conference, he saw this surprise from his daughter in the program book:

"My father Earl Selvage has had PH for 18 years and is the strongest person I have ever had in my life. We live half the world away from each other now, but everything he has taught me is with me every day.” — Love, Megan

Many of you know first-hand how extraordinary the Conference experience is, and if we are unable to attend, we share in the experience through the Conference Blog, email group messages from those who have been there, and through these Notes of Thanks and Remembrance in the program book. It is a great time to reflect on how grateful we are for those who have made a difference in our lives, and to remember those who are no longer with us. It is heart-warming and inspirational to read the Notes of Thanks and Remembrance in the program book.

Anyone can create a Note about the person or people who have touched their lives to share with all of PHA’s Conference attendees. Please consider submitting a Note of Thanks and Remembrance for this year's Conference program book. The donation of $25 for a 40 word entry will go towards supporting the Conference Scholarship Fund.


Kathryn Frix

Kathryn Frix
Online Community Liaison

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.