NAAF Tortoise & Hair 2019 Recap

This year saw the 34th annual Tortoise & Hair conference and walk in a lakeside Seattle hotel, an effort by the National Alopecia Areata Foundation (NAAF) to raise money for alopecia research and support. I attended the conference this year, and I’m happy to report that 2019’s conference was amazing.

The first day was basically registration day, and since my mom grew up in Seattle, she had to go meet some friends as soon as we got there. I had set up a table that was supposed to collect the experiences of people in my age group, the 11-13-year-olds, to go towards the writing of my new alopecia book. (Learn more about that at https://peytonpecia.com/2019/06/09/) I didn’t get to spend much time with my group, but it was a very productive day.

Day two was pretty ordinary.

Day three. We woke up at 6 in the morning and drove 30 minutes to the hotel from my grandparents’ house. It was going to be a very cold 2.2 miles, so I had my official T&H shirt over my jacket over another shirt. After posing for a giant group photo, Mom and I joined up with Gigi and her mom as the walk started. Along the way, Gigi and I discussed everything as we looked out over the water and at the amazing variety of trees and flowers. Soon we came to the midpoint, a wire fence. Then we went back. At about 3/4 of the way through, Gigi and I saw Mt. Rainier peeking over the horizon. We, of course, stopped to take pictures. Almost at the end of the walk, we found Leah Hayes’ mom (https://peytonpecia.com/2018/12/09/alopecia-spotlight-leah-hayes/ for her story) and Gigi’s mom, my mom, and she discussed Leah’s amazing swimming ability. After the walk, we had a full day of kids camp. Among the things we did was swim in the freezing-cold swimming pool inside the hotel and a Young Adults panel in which a group of older teens sat in front of the Tweens and Teens groups and answered questions about their own alopecia journey. After camp, our parents revealed to Gigi and I that they had been planning to go out for dinner. Both of us agreed, and we took Mom’s rental car to a restaurant called Torero’s Mexican, where we spotted another handful of alopecians. We then headed to Menchie’s, which was across from a boba store called TasteTea that had a line out the door. Then we headed back to the hotel to get ready for the dance party. I had planned to stay up until at least 11:30, but my body betrayed me and at 10 I went up to my hotel room alone — Mom wanted to stay and talk for a few more minutes, and we had a room at the hotel because we anticipated a late night — and collapsed on the bed.

On the last day, I woke up at 8:15 and got ready for a meeting with Josh Dobbs, an alopecian and backup quarterback for the Pittsburgh Steelers. He is an aerospace engineer and is very interested in aviation and space, so as a present we got him a copy of The Martian, my absolute favorite book. For 30 minutes before camp, we discussed football, both of our experiences at Space Camp, alopecia & Dobbs’ experiences with it, and where he would go post his football career. Ironically, he was there for a Q&A with every age group! It turned out to be a very good way to get answers to questions I hadn’t thought of asking. We ended the day by doing a circle hug. I filled up my notebook with my friends’ phone numbers and checked out of the room. Then it was time for a closing session. Josh Dobbs and Leah Hayes both spoke, and Gary Sherwood gave out prizes for the most fundraising. With $4,909 raised, it was no surprise at all that we won first prize. Afterwards, everyone had sliders for lunch in the vendors’ area, and Gigi and I lined up for henna head crowns on one side of the room. Once the hennas were done, the goodbyes were said, and the sliders were eaten, Mom and I drove Gigi and her mom to the airport and said our final goodbyes. In both of the T&H conferences I’ve been to, Gigi was the best friend I’d made.

One of the most amazing things about the conference is the chance to, no matter how old you are, meet kids and people who are going through the same things as you. The opportunities to make friends are endless, and I experienced it firsthand in my Kids Camp group.

Team PeytonPecia raised 14% of the total funds, and I earned an all-new Fire HD10 Tablet. That was cool, but I think the real prize is the $34,120 that all of NAAF’s fundraisers collectively raised. Thanks to the donors for all your support, and to all my readers for continuing to support this blog.

Guys, I’m sorry for this post being so long. I really wanted to get everything in one post.

I’m Featured!

Today, I am officially featured in the Ventura Boulevard magazine with their article here. In January, I got interviewed by the magazine, and two weeks later I did a photoshoot. Most of my quotes detailing the feeling of my Q&A with Ryan Shazier and my outlook towards being “afflicted” (big air quotes there) with alopecia showed up there, as well as my parents’ views about me. All in all, it was a great story to run (I may be a bit biased here) and I’m grateful for the publicity.

Alopecia Spotlight: Leah Hayes

Recently, another huge milestone for alopecia youth has come to NAAF in the form of Leah Hayes, who won Sports Kid Of The Year (SKOTY) at Sports Illustrated Kids. The award goes to kids who have shown exceptional sports talent.

Here’s what Sports Illustrated has to say…

Leah Hayes wins. A lot. The 13-year-old swimmer almost never loses when she races near her hometown of Sugar Grove, Illinois, a suburb of Chicago. She owns six national age-group records, two of which she set this year. In some longer local events, she laps her opponents. Winning fuels her. “Who doesn’t love winning?” she says.

But as much as she loves winning, she hates seeing other people down. After a victory, Leah will often swim over to a competitor who is taking the loss hard and console her. Officials tell her coach how impressive Leah’s sportsmanship is. And she wants to make others better. Her relay times are sometimes faster than her individual ones.

There was a period, however, when Leah wasn’t so confident. When she was six, she began to suffer from alopecia, a disease that causes hair loss. After struggling with its effects, she now embraces her look—and uses her success in the pool to spread a message: “Don’t let anything hold you back. Be confident in everything you do.” Her ability to win races makes her a great swimmer. Her ability to do it with grace and positivity makes her the 2018 SportsKid of the Year.

This story appeared first at sikids.com.

Scratch

If you need a good foundation for block coding and/or want to join Programmers Coding Baldly, this is the website for you. Subscribe to Sprocket today!

Sprocket actually made a typo–the URL is scratch.mit.edu.

 

Sprocket

Scratch, is a computer coding website created by MIT, is great for all levels of block coders. It is fun and easy to do. On scratch there are easy tutorials and on youtube.  There are various types of games, from catch games, to mazes. If you are interested in block coding I would recommend this website. This is the link for Scratch. http://scratch.mit.edu.org

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Programmers Coding Baldly

Hello! I’ve decided to create an alopecia community based on coding in Scratch, the block-coding programming language that has been a hit for anyone who likes to code. It’s called Programmers Coding Baldly, and I’ll be partnering up with Sprocket, run by my friend and colleague Ella, to bring STEM and coding to the world of alopecia. Scratch is a website where you use colored blocks to form code, which you can then run and share to the world. With Scratch, alopecians can get a new kind of courage–one that comes from the knowledge that they don’t have to be Bill Gates or Elon Musk to create something special. My Scratch account is Staria07, and you should definitely check it out. Anyway, I hope you liked this post. Make sure to join Programmers Coding Baldly and check out Sprocket!

One Year Anniversary

Coming up soon (December 4th, mark your calendars) I’m going to be selling $0.50 alopecia pins to celebrate. It might be trivial, but everything is going to the NAAF or National Alopecia Areata Foundation. Only a little will help!

Alopecian President? Oh yes!

I am running for Student Council President this year. I think it’s a breakthrough, because I may be the first alopecian girl to run for President. This is great especially since I have an edge: Even if they don’t remember the name, they’ll remember the baldness.

My motto is Hemann Makes It Happen, because I plan to do lots of things past presidents have said they would do, but none have ever done it. The post has been short, but sweet. Here is my speech:

Presidential Speech

Some of you know me, Peyton Hemann. Last time I did this kind of thing, it was a pretty big occasion–One Friday in 4th grade, I took off my wig, conducting a Q&A with Steelers NFL player Ryan Shazier to teach students about alopecia, the disease that made me bald. Well, here I am again, this time with a big goal in mind, and I’m asking YOU to vote for me for President of the Student Council. Every year, we have the same old things in the student store. Pencils, pens, erasers, pencil cases. Well, I’m making that better. Here’s to new items, better items, and more fun items. For example, I would put in ”keychain games”, little games that can go anywhere with you. They are fully functional and fun. In addition, I’d introduce new clubs–the Leadership Club, empowering kids to become strong leaders, and the Community Service Club, cleaning up our community one step at a time. Another cool idea is to let students play Minecraft Education Mode in Technology, an amazing learning (and fun) tool that is safe and helps the teaching process. When it comes to qualities, I am productive, trying to get things on my agenda done very quickly, keep my colleagues on track and on schedule, and listen to your opinions and ideas. I would post an Idea Box, so anyone can come up with an idea and drop it there. I’d be open to anything. Robotics club, Unicorn club, Fortnite club, you name it, the sky’s the limit! If you want cool items, exciting clubs, and a president who listens to your ideas, just remember to vote for me, Peyton, because Hemann Makes It Happen!