Skip to content

Archive for

525,600 Minutes

 

 

Mark Klafter

Mark Klafter

Today we share another insightful post from our “Guest Dad Blogger” and long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with epidermolytic ichthyosis (formerly known as EHK). In this post, Mark shares why he and his family have been attending and participating in the FIRST National Conference since 2002, and why it’s not too early to start planning for the 2016 Conference in San Diego!

Twelve months?…52 weeks?…365 days?…525,600 minutes?   How do you measure a year?   No matter how you look at it, we are now a little less than year away from the next Family Conference to be held in San Diego, California.  For those who  have attended a prior event, the anticipation and excitement has likely begun already.  For the many new families who have discovered FIRST over the past year, as well as those who have been a part of this community for longer, but never attended a conference, NOW is the time to start planning.

Why do I need to go to a Family Conference, you ask?   What’s so great about it, you wonder?   And, why do I have to start planning a year in advance, you say scratching your head?   Let’s start with answering the first two questions.

It’s almost impossible to truly explain why it’s such a worthwhile event.  The conference is simply the greatest experience you will ever encounter for you, your family, and for anyone affected by ichthyosis.   How many of you struggle to find a doctor that really knows and understands the condition?   WhJohn Schoendorf, Mark Klafter, Andrea Thorn, Lawaynta Wigginso wants to meet someone else with your exact type of ichthyosis?   And wouldn’t you like to shake hands with or hug that person you’ve been texting and Facebooking with, trying to solve that endless list of questions and challenges?   Well, all that can happen at the magical place called….the FIRST National Conference.  The conference is your opportunity to build those connections with so many other people who share your experiences every day; to ask an endless number of questions, and get just as many great answers in return.   It’s a place to meet and consult with the brightest and best medical minds in dermatology, who dedicate much of their lives to all things ichthyosis.   It’s an opportunity to feel safe, a place to feel accepted, and a time to be supported at a level you’ve never experienced before.

Just over 13 years ago my youngest son was born with EI (otherwise known as EHK).  Like many of you, it was quite the surprise, and changed our lives forever.   Three months after he was born, I boarded a plane alone and headed to the 2002 Family Conference in Seattle.  I’ll admit, the experience was a bit surreal.  It was even overwhelming to a degree.  But two and a half days later I went back home armed with knowledge, confidence, and friendships.  Most importantly, I left the conference knowing everything was going to be okay; that my wife and I COULD do this and that our son would grow up to be the ridiculously awesome 13 year old he is today.   We’ve never missed a conference since then.  San Diego will be our 8th consecutive one, and far from our last.

Now, the “Why?”   Why do you need to start planning this far in advance?   Well, there is a lot to consider.   Who from your family will attend?   Are you going to travel just for the conference, or make a vacation out of it and visit other areas?   How will you pay for it all?   Ahh, yes…that’s the tricky one.  The #1 reason I hear from people as to why they didn’t attend, or haven’t attended is due to financial reasons.   But that’s why planning ahead is critical.   I believe every family CAN experience the conference regardless of financial situation.  I searched online for the cost of airfare to San Diego from a dozen random cities, large and small, around the US.   The average airfare is approximately $375 per ticket.   It’s not cheap, I’ll admit.   But we’re one year away.  You would essentially need to save $1.03 per day, if you started saving now.   The hotel is usually about $119 per night, and you’re there for at least two nights.  That’s another $0.65 per day you need to save.    When you break it down, it all seems a little less daunting.

So how do you get to the point where you’ve saved enough for the trip?   And for more than just one person perhaps?  Here’s a few suggestions:

  • Start a change jar for all your spare change every day.
  • Find one thing you spend money on regularly that you can either cut back on or cut out all together. Skip the grande mocha latte and brown bag lunch for a while.
  • Walk instead of driving if you can. Figure out how much you’ve saved in gas money and put it right in the jar!
  • Raise the money through a small fundraising activity.
  • Get the whole family involved. Perhaps you or the kids can walk the neighbors dogs, babysit, hold a bake sale or have a neighborhood car wash.

There is an endless number of ways you can do it.  And you’d be amazed how people are willing to help when they know what you’re trying to accomplish.

There are even financial aid opportunities offered by FIRST that can help a limited number of families with conference expenses.   But no matter what path you take to get to San Diego, you have to act NOW.  Don’t delay!    It’s an experience you don’t want to miss.   Plus, now there’s only 525,595 minutes left.

-Mark Klafter

UFIRST Scholars Talk College Prep & Ichthyosis

UFIRST ScholarsPlanning for college, both financially and emotionally, as well as academically, can be a daunting task. And, if you have a visible appearance difference, like ichthyosis or a related skin type, it can present even more challenges. We asked our UFIRST scholarship recipients just how they felt about planning for college, and whether or not having ichthyosis factored into their planning and/or decision making process. The responses varied greatly, and we’re excited to share them with you in upcoming weeks, beginning with today’s interview with 2015 UFIRST Scholarship recipient Ryan Balog, affected with Congenital Ichthyosiform Erythroderma (CIE). Discover how Ryan planned for college, what he may have done differently, and how he strongly believes in educating new friends about ichthyosis.

How did (or didn’t) ichthyosis affect your decision to attend college?

Balog-Ryan-2015-web

Ryan Balog

Having ichthyosis personally did not affect me in my selection of a college or deciding to go to college. I personally always wanted to become a math teacher and share my gift in math by instilling confidence in these skills to the next generation of students.  I knew  attending college would be required to reach this goal. Luckily, the college I decided on, LaRoche College in Pittsburgh, was very close to home and I will be able to commute and live at home.

What can you share with other teens, or parents of teens, regarding preparation for college?
If I were to share a few things about my preparation for college, I would mainly focus on scholarships. College tuition is so expensive to begin with, not to mention the added-on costs of books, housing, and dining. One way I personally was able to help reduce the cost was applying for a lot of scholarships, like FIRST’s UFIRST scholarship. A scholarship, here and there, can really reduce the cost of books and tuition per semester. My mom always says “If you don’t try, you will never get,” and I strongly agree with that, particularly with scholarships. So my college preparation taught me to apply for as many scholarships and aid as you can.

Conf2014-AffectedTeenBoys-RG-smaller-edit2

(L to R) Jelani Hedley, Braden Chan, Ryan Balog.
2014 National Conference-Indianapolis

What do you wish you had known about the process that you would like to share with teens?
One thing that I wish I had known more about prior to applying was the importance of being well-rounded. Luckily, I was fairly well-rounded, but could have done more. If I were to do it all again, I would definitely join as many school sports, clubs, and events as were available to me. I strongly suggest volunteering, if you do not already.  I volunteered as a junior camp counselor for Camp Horizon, Millville PA. They have a lot of these camps for kids with skin conditions throughout the summer.  I also volunteered at an assisted living facility, where I was in charge of running the bingo games. I personally learned that if you are on the borderline of getting into a school or getting a scholarship, they base a lot of their decision on your extracurricular activities.

How do you plan on telling others about your ichthyosis while at college?

I plan on educating fellow classmates and teachers about icthyosis. When I was younger, I would always be shy about telling everyone, but now I am more comfortable explaining the condition of ichthyosis. Nothing bad will happen if you ever share the story of your ichthyosis, and inform others about the condition. It will only raise more awareness and benefit you and others in the long run.