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.

Mars 2020 Naming Contest – I’m in!

I recently entered in the Mars 2020 Rover Naming Contest. Watch the video below to learn more!

I explain a bit about my rover name.

Aspiration

Everyone aspires to do something in life. For many young individuals including myself, that aspiration is to go to Mars. The pull of space is growing ever stronger considering new discoveries in our solar system and beyond, and its conquest is inspiring to many around the world. The rover’s goals to discover whether life ever existed on Mars and characterize its climate and geology pave the way for human exploration, a goal I want to be a part of, and an aspiration of a lifetime. Since visiting JPL in third grade, I have wanted to have some part in NASA and JPL’s work. After attending Space Camp twice, and numerous STEM camps, I have discovered my dream of becoming an astronaut and going to Mars. With this mission comes the space-oriented aspirations of the young and old, and they deserve to be represented in the name of the rover, Aspiration. 

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.

Fitting In

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An anonymous poem I found.

One of the most frightening things about losing my hair was what the public reaction would be. In the weeks leading up to becoming completely bald, I drove myself crazy thinking about what others might do to me. That’s all changed, of course. Now I never shy away from social situations, at least not because I’m bald.

Continue reading “Fitting In”

Where Alopecia Takes You

When I had alopecia at first, I didn’t regard it as anything important. Oh cool, I don’t have hair. Yay, no lice. But lately, having alopecia took me to places I never dreamed of before.

On April 23, 2019, I found Kennedy Space Center and Kennedy Space Center found me. High school students from all over the world were invited to take part in the Conrad Challenge, but few got to go to the Innovation Summit as finalists. The Conrad Foundation, led by Nancy Conrad, the widow of Charles “Pete” Conrad, strives to encourage the spirit of innovation and entrepreneurship in kids 13-18 years old.

The students participating had amazing technologies to bring to the table: one group fielded S.A.F.E (Sound: The Alternative Fire Extinguisher), a portable unit that emitted 60 hertz sound waves to prevent wildfires from spreading. (Here’s what 60 hertz sounds like.) Others made auto-sorting trash cans, phone cases with integrated Epi-Pens, and suits that simulated Earth gravity for astronauts on the Space Station.

I could never match these levels of innovation at my age, and just as well I wasn’t here as a finalist. Nancy Conrad has a mutual friend with Karen Young, the reporter who wrote the article about me for the Ventura Boulevard Magazine here. When Nancy heard about me and my alopecia, she decided to invite me as a VIP guest.

So here I was, the 11-year-old girl with a bag full of peytonpecia business cards and my antique digital camera, feeling out of place on my first day at “The Most Inspiring Place In The Universe”. The first thing you see when you get through the security at Kennedy Space Center is the Heroes and Legends exhibit and Rocket Garden. We all gather under Heroes and Legends, then move to the Atlantis room, where the real Space Shuttle Atlantis is housed, for dinner under the shuttle.

Over the course of four days, we get to see teams do their Power Pitches. There are 6 categories this year: the classic categories, Aerospace & Aviation, Health & Nutrition, Energy & Environment, Cyber-technology & Security, and our sponsors’ categories, Smoke-Free World and Transforming Education Through Technology. There are some amazing inventions pitched to the judging panel, but only one team from each category can claim the title of Conrad Scholar.

During lunch, I conferred with a duo whose project was Protective Eye, a necklace packed with sensors to detect sexual assault attempts, then simultaneously alert the user, the attacker, and the authorities. The brains behind it were high school seniors Dominique and Erica. We came up with a R&D checklist and additional features to enhance safety.

I also was pleasantly surprised. I had come to the Conrad Challenge prepared to give business cards to anyone and everyone I met, and I thought I would be one of the only kids to do so. Turns out, since every kid is the CEO, COO, or founder of something, everybody has a business card. I walked away from the Conrad Challenge with a Rolodex worth of business cards from various Conrad Innovators, as they are officially called. I was also not-so-pleasantly surprised.

The first day, I took amazing photos of Rocket Garden. During dinner, the storage card mysteriously erased itself and deleted all my pictures–and the 200 or so photos of my 3-year-old childhood also stored on the card. I resolved to take better photos, and almost filled up my card.

At the end of the last day, we gathered for dinner and the awards ceremony underneath a real Saturn V rocket. Like all self-respecting tourists, I had brought my camera to the ceremony. We sat with Erica, Dominique, and their engineering elective teacher who happened to be tagging along. Afterwards, while everyone else was dancing under the gargantuan first-stage engines of the massive rocket, I took the chance to wander around the enormous exhibit.

I found a small display case full of space-flown artifacts from the Apollo mission and decided to take some pictures. But wait! I needed to check the storage. It was about 80% full. I went back to the photo-review app, but there was nothing there. Just like the first night, it had auto-deleted. Mom came over and reassured me that the 50 or so pictures she had taken of me were still there. I kept going around the room, telling myself that it was fine, but I couldn’t get around the fact that all my pictures were gone.

Then I found the Treasures Gallery–a hidden room filled with the objects, spacesuits, and a space capsule that all went to the Moon. It just filled me with calm, looking at the checklists, pens, suit concepts, and Apollo 14 command module. There was a corner dedicated to Apollo 13, and I checked that out too. Mom and I went into the Apollo 1 memorial. I forgot all about the pictures and enjoyed the last moments of the amazing week.

So the moral of the story? Alopecia can take you places you’ve never been. All you need to do is embrace it. And make sure you get a better camera than mine once you get to that place. All in all, alopecia is cool. And you might just get to watch people sell other people on extinguishing fires with sound.

P.S. Sorry this post was so long. I just needed to get all that off my shoulders. And seriously, unless you HATE space, you should go to Kennedy Space Center.