Tuesday, March 1, 2016

Rare Disease Day

While the rest of the world celebrated Leap Day on Feb. 29, 2016, the Herschelman family celebrated Rare Disease Day, a worldwide effort to raise awareness about all kinds of rare diseases.  And since INAD has less than 50 known cases in the entire world, we consider that to be pretty rare!

This is the photo we used to raise awareness for Rare Disease Day.
We started our day with a beautiful drive to Morrisonville about 30 miles from our home. Thanks to science teacher Janet Walch, Grace is considered a celebrity all across the Morrisonville School District. I think it's safe to say students and teachers there have adopted our "Grace-Filled Journey" wholeheartedly.

Grace and I loved all the signs with her photo around the school.
Mrs. Walch first invited us to speak to her high school science students last winter when they were studying genetics. At a basketball game earlier this year, she asked if we would consider coming back once again in February, and we of course, agreed.

It's safe to say that Grace LOVES to be the center of attention.
After parking in the circle lot (and remembering to close the door of the van this year - thanks, Janet), we walked in the front door to find all kinds of signs and notes with Grace's photo on them. It's very evident how much she is loved there, and we felt so honored to be invited back.

Grace really enjoyed being part of the program.
We got Grace situated in her purple throne where everyone could see her, and the students came in. Initially, it was going to be just the high school science students, but the seventh graders won the right to come when they won the penny wars, and the eighth graders begged to join too, so it was a full house.  Janet introduced us and asked us to share about any updates in Grace's condition or progress in the medical research studies.

The seventh graders earned the chance to get their picture taken with Grace for winning the penny wars.
As I began to talk, Grace immediately started babbling herself, and then just grinned at all the students.  It was the best part of my day, as I felt like she decided she wanted to tell her story instead.  I waited for her to finish, and I continued talking, although Grace was definitely winning all the attention with her smiles.

We are so grateful for the students' enthusiasm and their great questions about Grace and genetics.  I'm not super science-minded, but I have learned so much about genetics in the last few years. 

As we wrapped up the presentation, the students had a few gifts for Grace. Her favorites were of course the three brightly colored balloons, but they also gave her a giant bag of M&Ms, purple fingernail polish and St. Louis Cardinals temporary tattoos. Oh, and they also had a check for $1,100 for INAD research. Yup, you read that right. They held a penny wars leading up to our visit, which is just amazing.

Grace was all smiles getting to play with her new balloon.
Before leaving, the seventh graders earned the chance to get their picture taken with Grace for the paper, and we had a chance to talk with some of the students. One young lady told us she was going to talk with the Student Council at a neighboring school and see if they would be interested in joining our "Grace-Filled Journey." Another student, told us she was so excited to hear that the study was at Washington University, because she knew personally what a great institution it was.

The students' enthusiasm and encouragement is so uplifting to us.  I told them that someday, there would be no more INAD. We know that a cure might not come in Grace's lifetime, but we hope that someday, other families may not have to fight this awful disease. And I told the students, they were part of that journey. Someday, when INAD is no more, they can be proud it's something they were a part of.

Grace got to talk to Janet Walch before we left for the morning.
All too soon, it was time to return home, and talk about our plans for the rest of Rare Disease Day. We enlisted the help of other INAD families for a social media campaign using #beatINAD. Our goal was to get trending on social media sites like Facebook and Twitter. And while we didn't quite make that, Grace's post alone reached more than 20,000 people and had nearly 600 shares. It even got retweeted on Twitter by Bob Crawford of the Avett Brothers band, which was the highlight of the day for us. 

Although Rare Disease Day has come and gone, we will NEVER stop our efforts to raise awareness and financial support to #beatINAD. 


1 comment:

  1. I love the way Grace smiles and how her disease does not bring her down. Thank for letting us all listen to her story.