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Posts from the ‘Ichthyosis Human Interest’ Category

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?


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.


(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.


Awareness Begins at Home #IchthyosisAwarenessMonth

For Ichthyosis Awareness Month (IAM), we are delighted to be sharing an 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 his thoughts on deciding where and when ichthyosis awareness raising might have the most far-reaching impact.

Awareness Begins At Home #IchthyosisAwarenessMonth

Ichthyosis Awareness Month is now upon us.   If you didn’t know that, you’re not connected to FIRST in enough ways!    Many people struggle with what to do during this time.   How do I raise awareness?   Do I need to raise awareness?   The answers are “simply,” and “yes.”   But don’t worry, I’m not here to preach to anyone about what they “must” do.

I’m sure everyone would agree, ichthyosis is a very personal thing.  For many, they like it to even be a private family matter.   I get that.  And far be it from me to tell anyone how to live their life.   Like everything else ichthyosis-related, skin care, fundraising, etc., awareness is something you need to do in your own way, and at your own speed.  Also, in my opinion, awareness begins at home and with those closest to your family and community.  They are the ones who have the most interest in trying to understand, and perhaps educate others.

However, before you can educate someone else, you have to first understand what you’re dealing with.   Could you go out there to anyone and simply say “it’s a genetic skin condition,”  or, “my body doesn’t shed skin as quickly as it should,” or, “my body over-produces skin cells?”   Of course you could.  But would you really convey to someone what ichthyosis really is all about?  Would they have empathy for you or your child’s situation?   Would they be compelled to help another person understand ichthyosis, or perhaps support FIRST with a donation?   The answer is, likely, no.

Ichthyosis is complicateIAM_Logo_WebAddressd — period.   I’ve spent the last 13 years continuously trying to learn about and understand my son’s EHK –taking the science of it and converting it into an analogy or example that any nonmedical person can understand.   Only recently have I begun to feel like I’m at the point where I can give someone that clear understanding of what causes his skin to look and behaves like it does; what the complications in his life are because of ichthyosis. And, after over a decade of practice, I can do it in 2 minutes or less! Don’t worry, you’ll get there.

Once you feel you understand the condition, and can clearly communicate it, start with other family members, and your closest of friends.   These are the people you or your children will come in contact with more than anyone else.  Their level of understanding and “awareness” are critical. Again, this is where awareness begins, at home.

Once you’ve accomplished that, you’re ready to go tackle the world — should you choose to.   Perhaps try and schedule some time at your child’s school to go in and talk to his/her science class.   Maybe you can post an ichthyosis “fun fact” every day on social media.  Perhaps write a brief story/article for your neighborhood, church, or school newsletter.  Or maybe even you go BIG and contact the local media to see if anyone will publish a story on ichthyosis, and your family.   Whatever you choose, it has to be what you’re comfortable doing. That’s when self-advocacy truly resonates with others, and unquestionably makes a difference.

Happy Ichthyosis Awareness Month!

When to Know When They’ve had Enough Heat!

Today we turn to long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with Epidermolytic Ichthyosis (formerly known as EHK). Mark has been an active participant in FIRST activities and a frequent contributor to our FIRST for Parents Group on Facebook. His input as a mentor to other fathers and affected families has been invaluable. Just this past week Mark, once again, gave thoughtful insight into when and how to recognize the signs of overheating.  With the summer months quickly approaching, we thought it was an important message to share with our broader audience. Here is Mark’s input into a conversation regarding temperature monitors and recognizing your child’s signs of overheating:

“I would advise caution on the temperature monitors. My fear is that you will be lulled into a false sense of security. Generally kids with ichthyosis will be over heated long before you’d see a noticeable change in the actual body temp. Think about it this way. When you’re hot, you perspire. That’s the body’s way of regulating temp. Correct? It’s no different with your child or mine. The problem is that the moisture generally gets trapped under the thickened or scaly skin and doesn’t really evaporate, making them actually hotter, not cooler.

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

My advice would be to watch your kids closely when the weather is warmer. Each will have their own tell-tale signs. Some kids get really red cheeks. Some will start scratching their head more. It can be a variety of things. Eventually you’ll learn what to look for in your own child. And with younger children, who likely aren’t going to say anything until it can be too late, you need to teach them to recognize signs in themselves. And as always, for newer parents, I recommend being in the warm sun in small doses to start out, so you can see how they handle it. Maybe five minutes outside, five minutes inside, then graduate to 10 outside, 10 inside, etc. You’ll learn fairly quickly what they can tolerate, as well as what the warning signs of overheating are for your child. Just my two-cents.”- Mark Klafter

Stay tuned for more “pearls of wisdom” from Mark Klafter, as he will be contributing more insightful posts as the first “Guest Dad blogger” for FIRST!

More information on ichthyosis and overheating.

If you’d like to join the conversation on our FaceBook groups, log onto to: FB Parents, FB Young Adults, FBAdults, or FB Teens and ask to join. A FIRST staff member will promptly reply.

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A Change of Heart in the Dominican Republic

FIRST is proud to share stories from members all over the world as they travel the path of courage and self-discovery.  FIRST member, Bailey Pretak, a model self-advocate, has written yet another brave chapter of her own incredible life story — one that has never been hampered by her ichthyosis. We are delighted to take you along on the journey of Bailey’s life-changing mission to the Dominican Republic.

I’ve never been one to let my ichthyosis hold me back from pursuing what I want out of life.  This month was no exception. I willingly chose to go to the Dominican Republic, an island south of Florida in the Caribbean, for a weeklong mission trip.  The crazy thing about all of this is I cannot sweat and the “winter” weather in the DR is in the mid-high 80s!  I knew I would be out in the sugar cane fields with little to no shade, so I also made sure the doctors and nurses knew about my condition (they were at every village with the Vacation Bible School staff). I also had two spray bottles with me and I thought really hard about the best lightweight material to wear for the heat. I had four instant icepaks on me and I even had a hat and an umbrella to help with shade as well. (As it turned out there was plenty of shade, and sporadic rain showers to keep me cool. However, I did, and will always, err on the side of caution).

10150564_837593803443_2352085937239324575_nIt ended up being the most incredible experience.  I had already been to Romania twice on mission trips, but this one was different.  The Dominican Republic is a third world country.  I’ve seen the photos of the living conditions, but it cannot even begin to compare with seeing it firsthand.  These people live in tiny villages out in the middle of sugar cane fields.  Most have to travel twenty miles one way to get clean water.  Many work a full day and only earn $3.  They don’t know when they will get their next meal.  They don’t have shoes that fit them properly, children don’t have underwear, and they don’t have the privilege of medicine or even band-aids when they aren’t feeling well.

My dance ministry, Beautiful Feet, and I went down to lead Vacation Bible School with the children.  We wanted to teach them just how great God’s love is and how He is always there for them.  The children were so precious.  As soon as we would get off the bus, there would be a child in your arms or holding your hand. They just wanted love.  We had a translator to help with the Bible story, but when we were playing with the kids or helping them with their craft, we were pretty much on our own. It makes you realize how language is not as big of a barrier as you think. You learn words from each other.  Smiles, hugs, and laughter are universal. Their faces would light up when you’d show a photo of them, because they don’t have mirrors to see themselves.  While we were with the children, there were other people ministering through construction – painting, putting on new roofs, building new homes. There were doctors and nurses who would take care of the people bringing their families for medicine and healing.  People used their talents in basketball, baseball, and dance to teach and train the villagers. There were still others who would visit the homes to deliver supplies and to pray blessings over the families.  Lives were changed and not just the Dominicans.1454611_837600075873_3535319247137359167_n

I know that I went home with a full and changed heart. I came home with the knowledge of how over abundantly we are blessed.  I actually sat in my house and cried with gratitude for all that I have, all that I’ve experienced, and all that is provided for me.  I learned true joy from the Dominicans. They have so little, yet they are the most joy-filled people I have ever met. They don’t have much, but they can see that what they do have is a blessing from God. They also put far more weight into relationships with family and friends than we do.  I went expecting to bless them and in return I came back blessed.  I know I left a piece of my heart forever in those tiny villages in the sugar cane fields with the most beautiful and joyful people.

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Meet FIRST Member, Kenny Krips

 “I am no longer stuck…”

As life would have it, after a few failed attempts to connect during a very busy fall, we finally had the pleasure to meet with member Kenny Krips in Philadelphia this past October. Over the summer, Kenny had contacted the FIRST office to check in, say hello, and inform us of one important detail, “It was time to tell his story.”

We think it’s important to share it!

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its  treatment. His childhood, once depicted in a documentary entitled “Kenny”, was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age.

However, to his good fortune, Kenny was surrounded by the love of a supportive older brother, and a mother to whom he gives a world of credit for his upbringing.  “Raising a child with a rare condition that no one has ever heard of, virtually on her own, my mom never once let on that she was anything less than strong and confident,” he said. And, she taught him one of the most valuable lessons of all: Do not pity yourself. Respect yourself, and always present well.

And present well he does. Although Kenny admitted over the years he has experienced dark periods of frustration and low self-esteem, he now feels his life experience, including his ichthyosis, has brought him to a place of acceptance, with a good dose of wisdom.   He is a friendly, well-spoken gentleman, with a new perspective on life, and an enviable passion for his work.

“In a way, I am blessed to be around trauma,” Kenny proclaimed.

Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit at Cooper University Hospital, he has ample opportunity to connect with people in a very deep and meaningful way.

“This woman came into the trauma unit because she had been in a car accident. She had Alzheimer’s and was very confused and agitated. I sat next to her and just rubbed her foot. She did not ask what happened to me (lifting his hands up to show that they are very affected), she just sat, looked me in the eyes, and listened. And then she started to calm down. She seemed to really be affected by what I was saying,” he said, further explaining why his job is so fulfilling.  “The other day a man in the trauma unit stopped me and said, ‘thank you so very much.’ For what?, I asked. ‘You asked me if I was ok and let me know you were here to help me and that made all the difference.’ It really made me feel good.”

Kenny credits his job as being a major influence for his newly found perspective. “There are so many parts of my job that make me feel good about being alive. And as my mom always said, “If you help one person in 44 years, you did your job.”

He has also come to terms with the notion that “everyone suffers” in one way or another. “I do still get frustrated, sometimes. Like when I want to wear black or be outside on hot day. But everyone struggles with something once in a while…finances, career, health issues. Everyone faces the fear of the unknown,” he said as he explained that this realization has left very little room to feel sorry for himself. “I am lucky that I have a strong family unit, a job I love, and amazing friends.”

With regard to how he now handles adverse reactions to his condition, Kenny adds, “I would rather have people acknowledge the “difference,” then just stare or ignore. But if they do stare, or make a face, I just have to pardon them. Life is too good to worry about it.”

When asked how his life would change if he suddenly did not have ichthyosis, Kenny joked, “Well, I’d never be out of a speedo!”  But then he added, “I am absolutely okay with who I am. I am not mad at who I am anymore, no longer stuck. I feel good about what I do and I want to continue to do that. I don’t want to stop. I think the man upstairs has it all mapped out for me. Whatever time I do have here, I want to make the best of it…ichthyosis or no ichthyosis.”

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Life After the FIRST National Family Conference…


Meet FIRST Member, Anke Fronz

It’s been nearly 5 months since the family conference! But by all accounts, the special connections and life transformations are still going strong.   Recently we caught up with Anke Fronz,  and she was delighted to share how she has discovered a more confident, “fearless” self, since meeting others, for the very first time, with ichthyosis.


My name is Anke and I have ARCI Congenital Ichthyosiform Erythroderma (CIE). After several years, I finally took Dr. Amy Paller’s advice and signed up for the FIRST conference this past June. It was a tricky decision but deep inside, I knew this would be life changing.

I remember Peanut (my wonderful dog) and I driving to the conference. It was an interesting drive with lots of rain and some sun – not to mention, my accompanying bundle of nerves, and all of the self-talk! Recently, I was asked to write about my experience at the conference, but truth be told, I do not even now where to start. I went in as an insecure person-nervous and lacking in self-confidence, yet, somehow, still ready to go. I set the intention that I would meet people, not hang out in my room, smile a lot and, of course, deepen my knowledge about dealing with ichthyosis.

Once we arrived, Peanut, my faithful travel companion, was more than happy to go for walks and meet everyone he saw at the hotel. Deep inside, I feel he made it his goal to get me out of my shyness and have fun.

Well, it worked! I  felt quite differently on the days leading up to our arrival at the conference, than when I left. I met so many wonderful people and made some very good connections. I know that I will keep them from here on out and I cherish all the hugs, smiles and conversations over that weekend. It was so nice to meet people that were like me, and we had so many things in common. Plus, I met a lot of people that lived nearby and that was really nice to know.

For 42 years, I had a feeling that people with ichthyosis were out there, but I always felt alone. I guess because I never really met anyone with ichthyosis. Now, I am not afraid and I know that even though I may not see the friends I made or the people I met on a daily basis, there is this special wonderful group that I am part of and it makes me feel stronger. And, of course, thanks to Peanut, I met more people that I ever thought I would have on our first night at the hotel. It was wonderful and every part of me, inside and out, was smiling and beaming with happiness. Peanut was looking out after his mom for sure.

It was not only amazing to meet new people, but it was wonderful learning about how they handle their skin, and life in general.   When I was talking or listening to conversations about family support, or at what age they started putting lotion on themselves etc., it was at those moments, I thought about my family, especially my mom. She passed away in 2004 and she was my biggest supporter. She never made me feel different or let me get down on myself. Although, she never met Dr. Paller, or heard of FIRST, I know she would have loved the conference, and I know that she probably played a part in me attending this one. There are plenty of questions that I have about my childhood that I will never know or understand and it’s okay. You can not live in the past, the most important thing is to be in the present, in the now, as they say.

Anke & Peanut

Anke & Peanut

So, for the now, I am a lot stronger and more fearless than I was back in June. I take more pride and ownership of my ARCI CIE, it makes me “me” and I am very happy and blessed to have been given this life. I also do not feel the need to hide as much, stay under make up all the time. And on those days that it is so humid, and everyone is complaining, I walk with my head held high. I also can laugh inside when people are wearing shorts and I am freezing and in a sweater and pants. I am so very grateful to Dr. Paller, my dad and FIRST for everything and helping me out. I know that there is nothing that I   can not do, a person that I can not go up and talk to, because I am Anke, who loves to laugh, do new things and is not defined by just my skin. I look forward to future conferences, my work with FIRST, and growing the relationships I’ve created.

 - Anke Fronz

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Member with self-proclaimed “long legs not meant for running”, will run Aramco Houston Half Marathon for FIRST


It is always exciting at FIRST when new members are inspired in such a way that they immediately embrace our community, making the most of our services, resources, and opportunities to connect.  In June of 2013, we met Andrew and Heather Sanders for the first time, along with their son Ruairi, who is affected with epidermolytic ichthyosis (EI), at a regional support meeting in Dallas, Texas.  Ruari was just six months old.  In a little over one year’s time, they have made numerous connections within the FIRST community, providing support for others and enthusiasm for our advocacy efforts, in every possible way.  Today we are sharing the story of why Andrew, a man who self-reportedly does “not have legs for running,” will run 13.1 miles, to say thank you

Heather and I had decided we would try to run a marathon when we moved over to the United States. We had originally applied to do a full marathon in 2012, but our arrival to the states was delayed by a few months, so we decided to defer.  I ran the Houston half marathon in 2013, not long after Ruairi was born.  It was particularly hard to keep my training going on with little to no sleep in the early months!   Obviously, Heather couldn’t run in 2013, because it was only a couple of months after Ruairi was born. She did run her first marathon in 2014 and managed to beat my time! So, needless to say, I have extra motivation for 2015!

Sanders-webBut our story with FIRST began after Ruairi was born in 2012. We were obviously aware of the fact that his skin wasn’t as we’d expected.  It was very red in places, and sort of paper-like in others.  The doctors ran over a number of possible explanations, many of which were deeply concerning, and told us that he would be taken to Texas Children’s Hospital in downtown Houston.  Before he was taken by ambulance, one of the neonatologists mentioned the possibility of ichthyosis to us.

I was aware of ichthyosis, having seen a documentary back home in the UK about a family in England who had two daughters with harlequin ichthyosis.  When we googled the term ichthyosis, the image results primarily showed babies with harlequin, so we knew that Ruairi didn’t have that particular form of ichthyosis. But we were obviously still very worried about him.  Heather quite quickly found her way to both FIRST and the UK ichthyosis support networks and we have found them to be an amazing resource. Indeed Heather is very active in the Facebook community, both with friends whom we’ve met at FIRST conferences and with new members.  We had a great time at the FIRST Family Conference in Indianapolis this past summer. We met some amazing people and learned a great deal.

We were even motivated to organize a fundraiser day at the Houston Astros a few months ago, which we were more than pleased to do.  It’s really great that MLB teams do this for charities.  It brought some of the local families who are affected by ichthyosis together, while raising some awareness among those who came to the table and picked up a wristband or some literature.  Obviously, there is still a long way to go.  It was just only this weekend that I had some harmless but frustrating comments from strangers that Ruairi looked like he’d gotten too much sun.  My stock response is to tell them that he has a skin condition and, and no, I haven’t let my two year old get a second degree burn, although I tend to only think the latter part of that line!

In all honesty, I’m running the 2015 Houston Marathon, January 18, 2015, in hopes that I can raise some money to help 10151801_10152426926206153_735919315687901046_nsupport FIRST by way of thanks for the support they have given us.  I’m sure I can get some of my friends to sponsor me on the basis that a half marathon is a challenge for anybody, but particularly a former basketball player of 6’8″!  My long legs are not really made for running.

In the longer term, I’m sure like most people reading this, I really hope for a cure.  I’m confident that a good amount of research into genetic conditions is already happening and that people who deal with ichthyosis can benefit from scientific discoveries elsewhere.  Obviously this all comes down to money.  Perhaps the money I raise can also be put towards research.  But perhaps just raising a little awareness will also do some good! A donation link has been set up so you can join us in supporting FIRST, and making a difference.

-Andrew Sanders

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Can Reality Outshine our Wildest Dreams?

On any given day, Amy and Andy Coolidge of Frisco, Texas, can be found sprinting from one doctor’s visit to the next, while keeping up with life’s never-ending demands and “multi-tasking to the max.” Yes, they are a married couple in the middle of their lives. Yes, they have jobs, housework, finances, and errands to run. And, yes, they are raising three young children.  However, the Coolidge’s are juggling just a bit more than most – as each of their three children have special needs.

Their children, Chase, age 8, Madison, age 12, and Drew, age 14, are all affected with the rare disease, Trichothiodsytrophy, also known as TTD.  According to Dr. John DiGiovanna of the NIH, “TTD is a rare autosomal recessive disorder that is characterized by brittle, sulfur-deficient hair, short stature, and multisystem abnormalities. Patients may have exaggerated sensitivity to sunlight (photosensitivity), developmental delay, recurrent infections, and ichthyosis.”

Mom Amy says, “Trichothiodystophy affects all of my kids differently.” Madison has Primary Immune Deficiency, a condition which weakens the immune system, allowing repeated infections and other health problems to occur more easily, and Neutropenia, an immune deficiency which presents as an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections. Chase also is immune deficient and has most recently been diagnosed neutropenic as well.

And yet, even while faced with these extraordinary challenges, the Coolidges greet each day with hope, energy and grace. They are bound and determined to make the very best of their situation and the very best lives for their children.310

“These kids are amazing, challenging, daunting, and inspiring,” says Amy.

”People stop us at the grocery store, at school, and in restaurants to comment on how much joy our kids bring them just by seeing them, knowing them, or talking to them. Every day brings a new emotion. Some days it brings happiness, some days it brings fear; but every day brings knowledge. We learn something new about Trichothiodystrophy and ichthyosis every day.”

But on one particular day last February, they were greeted with something a little more – a stroke of magic, courtesy of the Make-A-Wish Foundation.

IMG_4384They were informed that Make-A-Wish would not only be sending them on a spectacular trip to Disney World, for seven days and seven nights, but the local Dallas Make-A-Wish chapter would also be granting the “firefighting” wishes of  little Chase, making him an honorary firefighter for the day. “He got his own bunker gear. He flew in the Care Flight helicopter, and they even had him put out a fire and rescue someone!” said Amy as she described “Fire Safety Town,” equipped with “mock” rescue operations.

“To see your son, who goes through a lot, doing something he really wanted to do is truly a blessing,” added Chase’s dad, Andy.

But the dream didn’t end there. Madison, now an official “Wish Kid” was also asked by fashion designer Loren Franco to participate in a fashion photo shoot!

“Madison was so excited, she had never done anything like this before.”IMG_4820

The photos were stylized as “dream like” fairytales with Wish Kids strolling through a sunny meadow, wearing dramatic, flowing dresses. But not just ordinary dresses, these were Loren Franco originals, and by that, of course, means they were born from the imagination and crafted of “the unexpected” – more precisely…the were made from real parachutes!

The photos will be featured in upcoming promotional materials for Franco’s “Reaching for the Stars” fashion show scheduled for September 20, 2014, where she’ll introduce her latest line of art-inspired fashions and accessories. The cat walk will be graced by the Wish Kids themselves.  “Madison and a few other Wish Kids were also asked to be a model in the fashion show in September. It’s like this wish never ends!” added Amy.

So, yes, for this special family…reality shines on. Stay tuned.

Do what you love and your skin will follow.

As many of you affected with ichthyosis already know, at times, this condition can present enormous challenges. And yet, as many of you also know there are still other times when ichthyosis is simply a background hum to the music of life.  Member Brian Gass, affected with CIE, is living, walking, and hiking proof that although his ichthyosis is a part of his life’s journey, it follows his lead, trailing far behind his pursuit of passions, dreams, and interests.

Recently Brian contacted us to let us know he’d be doing a little traveling this summer. Well, actually a lot of traveling – 2,650 miles up the spine of the Sierras from Mexico to Canada, to be exact. Although he is an avid hiker, racking up “over a thousand trail miles on three continents,” this journey will prove to be a journey of his lifetime. And for the benefit of others affected by ichthyosis who share in his love of the outdoors, periodically throughout the summer he will be reporting back to FIRST and on his blog:   (  Not only will Brian be sharing an up-close view of the most breathtaking terrain, but he will be sharing everything he learns and experiences about the care and safety of his skin along the way.

We are happy to share Brian’s mission and his message: do what you love first and your skin will follow. 

Here is a personal note from Brian with more information regarding the details of his upcoming adventure.

From Tea to Transformation #FIRSTPhantomTea

by Mo Neville
Last year, at this very same “Phantom Tea” time of year, I shared an article I had written in 2011 regarding a life-changing moment that occurred while sharing a simple cup of tea.  This year, as we gathered in a circle at our conference table, detaching from our computers (if only for a few hours!) and assembling the Phantom Tea packets, I was once again reminded of the importance, power, and warmth of a simple human connection.

It seems the basic notion of smiling at someone, making eye contact, or just saying hello, actions so uncontrived they are hardly spoken of, have become effortful, and sometimes, in some lives, even obsolete. So much so, that some of the world’s most influential people are joining together to stop the spreading of isolation and loneliness. It is no wonder that media icons Oprah Winfrey, Gayle Kine, and Sonjay Gupta are now lending their names and their support to a campaign that reflects this very same message of connection: Just Say Hello.

And although this article is not “new,” and in fact, was my very first post when I arrived at FIRST nearly eleven months ago, the message itself is as resounding today as the day it went from a life experience to a life-changing moment.

I hope when you open your tea packets this week, you think of my story below – or better yet – that you reach out to a friend, a neighbor, or even a stranger you have never met. I hope that you are inspired to share a cup of tea, a bit about FIRST, and your life with ichthyosis…

…or to simply say hello.

Ode to Tea…

{April 1, 2001} I spotted the name in the daily soup of tweets…One Hundred Cups of Tea. Now, you can call it karma, a sign from the teapotuniverse, or whatever your word is for “knowingness”, but I knew in approximately 3.3 seconds – the time it took to read the first sentence of his mission (can having tea with a stranger change your life?) – with no plans of traveling to the UK, and with a rather bitter distaste for tea in general that I would be having tea with him someday.

That day was today.

I will admit I had a little bit of the pre-caffeine jitters. But I was definitely more excited than nervous. After all, this person was making the most inconvenient of gestures – after traveling the first 3,500 miles, he’d stop in route from one side of the world to the other, to meet some lady he’d exchanged a few pleasant emails with…for a cup of tea. I mean, really, who does that?

After struggling to decipher the new atm-ish parking meters peppering the streets of Philadelphia, it suddenly dawned on me – what if we don’t get along? As I opened the coffee shop door with a four-sugar lump in my throat, I was pinched by the thought of the worst case scenario: volcanic silence – that unstoppable eruption of nothing to say moments…particularly painful amongst strangers. Ugh. I hate when that happens.

There was a slight, early-twenty-something-rocker-type with his head buried in a laptop, sitting in the middle of a couch. He is young enough to be my son, I thought. That can’t be him. Maybe it’s the other guy, slightly balding, with the golf shirt and the Wall Street Journal under his arm. Nope. The young guy stood up. And as he moved in closer it was undeniably the friendly-faced tea sipper from the internet. “You must be Greg,” I said, hoping he didn’t deny his identity and run from this forty-(ahem) year old woman, saddling a cumbersome stack of bags and books. “Yes, hello, nice to meet you Mo.”

Phew. My worries were dissolved by the mere tone of his voice. How cheerful, I thought.

In fact, it took but five minutes to settle in, order our chai teas, and start chatting through the hours like two old bitties at basket bingo. Not only had I lost concern with a difference in age or a lack of conversation, but I quickly recognized we were more like-minded than I might have imagined.

He began by sharing an important moment. The moment, in fact. The one when he found himself walking around London, a place he’d move to with such high hopes of finding his life’s next phase – but instead only finding a growing frustration with the take-no-prisoner pace of the city. One day, while making his way through the fumes of impatience, he noticed something deafeningly odd. “I was looking down at the sidewalk instead of up at the beauty. I’d already forgotten about the castles. The history. Why I’d even come to London.” He stopped and thought, “I don’t want to live this way.”

But instead of running away to that next safe place; instead of continuing an outward search to recapture his optimism; his zest for adventure…Greg journeyed inward.

He wondered why he…and London…came to feel this way at all.

He wondered about the voices between our individual worlds – the ones that judge, that doubt, that keep us away from the conversation…the ones that make us strangers. “What if we look up, look at each other, actually have a conversation. Will it make any difference at all?”

Mostly, he wondered “Can a simple cup of tea with a stranger, change my life?”  Soon after his journey to have tea with 100 people, whom he had never met, began.

He spoke of the people he’s shared tea with thus far; the lone German woman he’d met on the bus; the older couple at the airport; the man outside the restaurant in the midst of a full-blown panic; the emails, the odd per-chance meetings; the occasional struggle to fill the awkward space of silence – the profound lessons he’d been learning from each and every encounter.

“I know now more than ever how important it is to have conversation. We’re pushing away from each other and we need to push back in the other direction, we need to really see each other again,“ he explained.

Soon the story of Greg was becoming very clear to me. This young Canadian man, a self-admitted non-social-butterfly, whom I’d never seen, nor heard of, who had taken a plane to New York, a bus to Philadelphia, slept in a hostel, and made his way through a strange city for a stranger…was the perfect person for me, or anyone, to meet for tea.  Because, as evidenced in his poetic one hundred cups journal, he is not only a delightful storyteller, but he is blessed with the gift of listening.

After three and half hours, it was time for us to part ways. I walked to my car, stuffed a soggy parking ticket in my purse and smiled as I realized something that I will carry with me for the rest of my days. Hmm. Just one cup of tea and we are no longer strangers.

I sat and jotted a few thoughts…

I think, some day, this young man’s life may be quite celebrated; at least for those who need him to be.

I think I will drink more tea.

I think I will one day write more of an ordinary Canadian who chose to have tea with 100 strangers — and in doing so, achieved the extraordinary.

I think someday, because of him, there will be a little less loneliness in the world.

I think there will be more empathy.

I hope so.

It’s such a beautiful dream…


 Phantom Tea for Two