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2020 Update

So far, 2020 has been a great year for this alopecian, and I hope you’re having one too! Here are a few things, past, present, and future, happening in my world this year.

Making a Change!

On January 23rd, Congressman Bill Sherman, our local representative, announced he would be co-sponsoring H.R.3332, a bill that would allow wigs to be considered “durable medical equipment” and be covered by Medicare. It’s a huge step forward for the bill and on our path to free wigs!

Reaching for the stars at JHU!

I’m currently funding my own way to JHU CTY, a residential program featuring a semester of intense astrophysics crammed into three weeks. At the time of writing, I’ve raised $1,535, so we’re almost there! JHU CTY is going to be the experience of a lifetime.

For the Win!

This past weekend saw the Coastal Championships, a Southern California swim meet I swam in. Even though I didn’t qualify for finals in any of my events, I won first in my heat in the 50 breaststroke, one of my strengths! In all, I swam a 100 breaststroke, 50 breaststroke, a 50 breaststroke in a 200 medley relay, and a 50 freestyle in a 200 free relay. It was the largest meet I’ve ever been to, and I earned it!

Keep it Going!

You can have an awesome 2020 too! Just keep doing what you love, hitting your goals, and staying cool with who you are.

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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.

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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.

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Updates

Since I haven’t been posting in a while (and I mean a while) I thought it would be fitting to catch you up on the major events so far.

Spelling Bee

I made it to the spelling bee once again and lost once again.

Photoshoot

A local magazine came by for their Top Ten Teens list and came across me, even though I’m 11. I had a photoshoot and will be featured on the Ventura Boulevard magazine.

Science Fair

This year, the 6th grade science fair is optional, and I decided to do it. My project is about making concrete out of Martian soil and testing it against normal concrete.

Micromanage Mars!

I’m writing code for a new game called Micromanage Mars! You are the director of Mars operations, and you have to make sure all your meters never reach zero throughout the course of your mission. Throughout the Hab and the greenhouse, experiments, crops, and life support systems beg for your attention. Keep your crew alive and they’ll thank you!

Second Year of Alopecia

As of last weekend, I have had alopecia for two years. It started out as universalis, then dropped to totalis. That means I’m getting closer and closer to hair!

OPI Trip

This hasn’t happened yet, but it will in about two weeks! I’m going to the Olympic Peninsula Institute with the rest of the 6th grade for a week to learn about the forces of nature.

Math Competition

I recently won 7th place in the Math League competition at Mirman School, along with two of my friends who got 9th and 5th place with me.

Swim Meet

In a recent swim meet, I broke all of my personal records in the 50 freestyle, 50 breaststroke, 50 butterfly, and 100 IM.

What Doesn’t Kill You Makes You…Taller?

I’m officially taller than my mom now. Yay!

Braces

I now have both top and bottom braces in. Hopefully they’ll stay in for two years.

That’s mostly it for the past six months. Well, I hope you enjoyed this post and check out more from peytonpecia.

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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!

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Welcome friends!

Welcome to my webpage, a place dedicated to children with alopecia. My name is Peyton, a 10-year-old who was diagnosed with alopecia at 8. I am here to help you through, and know that we are all a community. My blog is a place where kids with alopecia can freely post their troubles, and get answers from people who care. Hopefully, all that come to this page will get the help they need and deserve.

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Paving My Way to the Stars!

If you’ve been following me for a long time, you know that I love everything to do with space. Being the first woman on Mars is my dream! But it’s hard to find camps for kids my age that actually tests my smarts.

That’s where JHU CTY comes in! In my case, it’s a three-week program of super intense, collegiate-level astrophysics crammed into three weeks, taking place on the Johns Hopkins University campus. It’ll be a challenge, but it could be the beginning steps of my career in space for all I know.

The only problem here is that it costs a lot of money! $5,004 to be exact, which is why I started a GoFundMe to fund myself on my journey to the stars. At the time of writing, I have $720 in the GoFundMe and about $3,370 total, so we’re getting there!

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Making A Change

On Nov 18th, I visited California Senators’ office of Diane Feinstein and Kamala Harris to ask the senators’ support to co-sponsor a bill to help alopecians get insurance coverage for wigs.

In case you didn’t know, I am a legislative liaison for NAAF (National Alopecia Areata Foundation), which means I help to get our congressman and senators to support and sponsor bills so they can get to the floor of United States House of Representatives and the Senate (and hopefully pass).  These bills (H.R.3332 and S.2633) will include wigs (cranial prosthetics) as durable medical equipment and be covered under Medicare.  Can you believe that alopecia is a medical condition, yet insurance doesn’t cover the cost of wigs, devices that can help alopecians and cancer patients with their emotional health?

Kate, my mom and I first went to Senator Feinstein’s office and met with Jade Suh , gathering in their conference room in a beautiful high rise building.  Jade was not aware of alopecia, so it was an eye-opening piece of information for her and she was very welcoming and eager to learn of the bill.  I felt that Jade was empathetic and truly wanted to help.  We made one more person aware of alopecia, so one small step was accomplished.

Next, we met with Morgan White, representative at Senator Harris’s office. Danielle and Anamarie was able to join the three of us now.  Kate wears a wig, Danielle has some hair growing back, Anamarie lost her hair as an adult fairly recently, my mom was from a parent’s journey and of course me… the kid’s perspective. Together, we represented every corner of the alopecian community. Morgan had a friend in college who had alopecia and she was super enthusiastic to hear our stories. Morgan listened intently and I felt that she truly understood the need of this bill. 

I am hopeful that with our efforts and the help of these wonderful females, Jade and Morgan (and of course our California Senators Feinstein and Harris) can help us get one step closer to make a change, not just for alopecians but for all who are bald from a medical condition.