Skip to content

Posts from the ‘2016 FIRST National Conference’ Category

FIRST Member Lists Top Ten Reasons to attend 2016 FIRST National Conference

I have attended four FIRST National conferences, with my parents in the ‘90s and now my own family. Every single time I learn something new, make new friends, and leave the conference bursting with energy and hope for the future of our rare disease. If you or a family member is affected with ichthyosis or a related skin type, this is an absolute “don’t miss” event. Here’s why…

1)   Meet the Medical Experts – The National Conference offers the rare opportunity to learn from ichthyosis & related skin type experts. Experts. There are only a few in the country, and you can meet them, one-on-one! Free, fifteen minute clinical appointments are even available!

2)   Surround Yourself with Affected Families & Individuals – For once, ichthyosis is the majority. You’ll see people with your type of ichthyosis in the elevator and in the halls. You’ll see skin flakes on chairs. You’ll see people putting lotion on everywhere. Kids will hold hands with others and feel comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see it: you are not alone. This, by itself, is a life-changing experience.

3)   Make Friends that Last a Lifetime – Dealing with ichthyosis can be very isolating, not only for those affected, but for parents of affected children. Many parents feel overwhelmed with everything that comes along with an ichthyosis diagnosis, and the “ichthyosis family” is a support network that runs far and wide. At the conference you will no doubt spark connections for a lifetime.

4) Get ideas – Did you know that some people use a Dremel drill for their feet? That sleeping with surgical gloves can help your cream work? That UV rays are good for some types of ichthyosis but not for others? The wealth of information at the conference is always astounding – both medical and firsthand trial-and-error. Some of the most effective treatments I’ve found have been from suggestions at the conference.

5)   Stay In-the-Know – You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new with FIRST, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ichthyosis to a classroom or employer.

6)   See Your Future – The conference offers the rare opportunity to talk with those ahead of your life stage. New parents with affected toddlers can meet happy and adjusted teens with ichthyosis. Young adults can talk with 30-somethings about what it’s like to get a tattoo, get married, or nurse a baby while having ichthyosis. Adults can visit with seniors and find out what issues and solutions they’ve found for aging with ichthyosis.

7) Inspire Others – Ichthyosis makes for people of dignity, generosity, and perseverance. Sharing your strength with other new parents, other affected people, and even the dermatologists can be empowering to you. I’ll never forget how strong I felt when I was able to lift up a room full of parents just by sharing my own story. I am proud to know I have lessened the burden of others with ichthyosis.

8)   Have fun!  – From dawn till dusk, and beyond, the positive energy of the conference is contagious. We smile nearly the whole time we are there. The sight of the children playing together in the childcare room makes me tear up with joy. It wraps up with a Saturday night dance party and talent show! Plus, it’s San Diego. The beach, city, and nature are all right at our feet. Sign up for the FIRST San-Diego bus tour! A great opportunity to see the city and have fun with new friends.

9)   Meet the FIRST staff  – Did you know Jean Pickford has been with FIRST for more than 15 years? FIRST is more than just an anonymous funding source for ichthyosis resources, or an anonymous author of “fact sheets”. You’ll have a chance to get to know the FIRST staff, and to encourage them in the work they’re doing.

10) Score Free Samples  Generous sponsors and companies that are working on products just for ichthyosis contribute massive amounts of freebies—many of them are full size. The “swag bag” you’ll receive is guaranteed to make you feel like a red carpet VIP, and give you a few more things to try in your treatment.

-Denise Eiser, FIRST Member

REGISTRATION is NOW OPEN: http://www.firstskinfoundation.org/content.cfm/Ichthyosis/2016-National-Conference-Information/page_id/1460

#FIRSTNC16

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