A Q&A with EB Friends Creator, Chris Pez Matthai, Part I

We regularly celebrate the work of folks in various roles who are making a difference in the EB community, including researchers, educators, fundraiser creators and those with a special knack for connecting – people to resources, people to answers, and people to each other. One such person we’ve mentioned before is Chris “Pez” Matthai, co-creator of the web site EB Friends. We reached out to him to get to the heart of what he’s doing and why (and inquire about that intriguing nickname, too).

Matthai launched EB Friends in March of 2007 to provide an online source of support for people with EB and their families to connect with others with similar experiences, and to offer a valuable interactive forum to share information and resources. We’ll be running a portion of the Q&A this week and next week.

EB Resource (EBR): We see you out on EB Friends and our own site regularly, but don’t know a lot about you personally. We think other readers might like to know more, too. Where do you hail from? Are you from a large family? What do you do professionally?

Chris “Pez” Matthai (Chris): I grew up in New York, Long Island specifically. I have a small family. My brother, his wife, my mother and her husband are all on Long Island. I recently relocated to Utah. I am primarily a carpenter. Anyone need a carpenter in Utah? (laughs) This winter, I am beginning the process to do all it takes to become a licensed contractor here in Utah and get certified to be an IT consultant.

EBR: And when the heck did the “PEZ” obsession develop?

Chris: I’m obsessed with PEZ? Who told you that? Yes, I guess I am a bit. I have a few hobbies and collecting PEZ dispensers I guess is the quirky one which stands out especially in the EB Community. I’ve always had PEZ growing up, and in the late 1980’s I read an article in a magazine about how some of them were worth a lot of money. I had a few that were pictured in that article. I decided to start collecting them and now have somewhere around 1,000 different ones. I have used them as a tool to raise awareness and funds for EB research after I met a woman online in 2005. Lori "Lacee" Ryan shared the hobby and is an adult Junctional EB patient. Lori said the hobby was a great distraction for the hard days EB brings her. We became good friends, and she taught me a lot about EB in my early days of fighting against EB.

There are a few kids with EB who now have their own collections. Some of these collections are growing quite large. I look forward to seeing if they carry on with the hobby as they become teenagers and maybe even meet each other through trading and discussing them online. I actually have another fund/awareness raiser in mind for 2011 which involves PEZ. My favorite moment in the hobby occurred during a project two friends in the hobby and I were conducting for EB. PEZ Candy Inc. actually wrote to us, expressed their excitement with what we were doing with their product and invited us to their factory in Connecticut. This meeting led to another visit, which was called The Butterfly Tour. The Butterfly Tour took place in May of 2006. PEZ Candy Inc. had me invite a few EB Patients and their families to tour the factory. I selected a group that represented all ages and types of EB. The Executive Director of DebRA America back then, Suzanne Cohen, joined us too. It was a special day for all of us; the company too. We felt like we were the winners in the Willy Wonka story since PEZ Candy Inc. does not open its doors to the public very often. My collecting has slowed down a bit these days, and I am certainly not obsessed; however, my love for the company and their product is as strong as ever.

EBR: You’ve noted before that you do not have EB personally or have someone in your family with EB, though you have built a number of friendships with people who do. What is it about this disease that has affected you so much where it seems almost like a personal mission of yours to bring greater awareness and support individuals and families impacted by it? Is that a fair statement?

Chris: That certainly is a fair statement. After learning about EB, I wanted to do something. There isn’t a single person who hasn’t experienced a blister from new shoes or hard work. As a carpenter I have seen healthy grown men wince in pain from a broken blister the size of a pea on their hands. I myself have been close to screaming and cursing from a blister. I was appalled when I learned that EB existed.

Grace Peshkur was the first baby I met with EB. Her grandmother worked with my mother. As I learned more and attended local events, I met the families. I hope I can express my feelings properly here and pardon me if I get emotional. My drive is based on compassion. However, it has now gone way beyond that. I am always amazed at how positive these families stay even when they are shouting, cursing and crying. There is always some glimmer of a smile on their faces. Usually the faces of the EB Community have way more than a glimmer of a smile too. I saw, for the most part, how supportive they were of each other. I learned more about life and myself through my online interactions with these families. By the end of 2007, I was emotionally involved to a point where there was no turning back.

I’ve questioned my way of "helping" often and still do. I can be clumsy at times, which can translate into callousness online. Just recently I was told by someone I don’t see the wounds anymore and forgot why I am here. The very same week someone else told me I treat the community as if they are only EB patients and not humans, two opposites of the spectrum, and both comments cut deep. I really hope most people see me some place in the middle. I never want EB to be the main focus of my friendships, yet I also need to be very vocal about EB in order to do what I do. You see, we the people who don’t live with EB and are very involved are outsiders and will always be outsiders. When dealing with something as brutal as EB, people will always question your motives. Most people dealing with EB would run the other direction if they could. I am running towards it. As involved as I am, I am bound to say something wrong at times. I’m clumsy like that…In spite of my clumsiness, I seem to have endeared myself enough that I am trusted to act as a sort of hub for the families to connect with one another so that sharing things as basic as a roll of gauze can actually occur. EB is nasty and unpredictable. It creates loneliness and depression. It takes all of your time. I vowed a few years ago that for every hour an EB family spends on dressing changes, I would match in helping them find each other and make it easier to locate the answers to some of the questions they have.

EBR: You explain on the EB Friends site the story behind creating it, but I’m curious as someone looking at it nearly four years later – what are your thoughts on how the site has evolved? Has it surpassed your original vision?

Chris: HAH! Our crazy friend known as The EB Friends Social Network! I guess you are referring to the last interview I did in 2009, which explains its origins and my friendship with its co-creator Cristina Perez. The site is forever evolving and while it has surpassed many of my expectations, I feel I have come up short in many ways too. I am amazed at how the membership keeps growing and growing.

Boy, this is a tough question! I can’t figure out how to applaud the place without sounding like I am applauding myself. I should make it very clear that most people out there think I am EB Friends. That is so far from the truth. EBF is a collaboration of its members. They are the people who make it what it is. The members are the ones who recognize it was built on a solid ground of love, and they are the ones who keep the foundation sturdy while building upon it. As far as the technical aspect, I work with a team of people. This team has changed over the years since we all volunteer. Most everyone who has ever been on the team either has EB or has EB in their home. As different moments in our lives occur we drop in and out. Sara Denslaw has been there with us since the beginning and really stepped up to the plate when we lost Cristina. She and I agree on most of the issues that come up, and when we don’t agree she is always right. Don’t let her know I said that! Seriously, as I mentioned earlier, I am clumsy in this community. Sara has kept me in line more times than I can count. The whole team has, really. We only build what we see is needed. We take every suggestion, praise and criticism to heart and try to create something that will grow just by the people using it.

EBF has become an important resource to so many people out there. I never in my wildest dreams thought I would be so involved with something like this. There are times when things are quiet for a while, but our analytic reports show a steady stream of people checking in. Whether they are looking up old discussions for information or looking to see if they can lend support to a fellow EBF member, the people are there. This makes me very happy.

I know there are ways to improve the network, too. This is the most frustrating part. We are a small team with lives. There are many things we want to build onto the network. It takes time to build these things.

Check back soon for Part Two of our interview!

Sources:

EB Friends

Related Posts:

Resolve to Speak Up for EB Families

More EB Champions Worth Celebrating


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