Ichthyosis Awareness Month: FIRST ~ the official support foundation.

Moureen Wenik is the program and research director at the Foundation for Ichthyosis and Related Skin Types - also known as FIRST. I asked her to tell me about the Foundation, her role and how it can help patients and families affected by Ichthyosis. FIRST is based in America, but it's resources are available online for people across the world.

"When someone finds out that I am the Program and Research Director at the Foundation for Ichthyosis & Related Skin Types®, known as FIRST, typically, I am greeted with the same two questions: “How did you get involved with FIRST?”, and “Is someone in your family affected with ichthyosis?” The next question is, “What brought you to FIRST?”

 

Often, we are defined by what we “do”. Thankfully, I love the work I do and I love talking about it (actually I just love to talk!), so the inquiries are more than welcome. If only in these moments I had a glamorous, compelling story to tell - but I don’t. In truth, the position for the Program and Research Director was actually posted online. But what I can tell you is that I never dreamed, when I joined the staff at FIRST, that I would be brought into a community of caring and dedicated individuals working tirelessly to create awareness about this rare genetic skin disorder. This community of FIRST staff, Board of Directors, Medical Advisory Board, members and everyone affected were welcoming, and I quickly realized working at FIRST is not just a job or something I “do”; serving the families and individuals fills each day with rewards.

 

Answering the above questions is easy compared to giving an elevator speech about a 31 year old, thriving organization, serving a community where 300 babies are born each year with moderate to severe ichthyosis. Engaging people in conversation really isn’t very difficult when I use the words rare, genetic, no cure; it is when I use ichthyosis that I throw people off and the education begins! Thankfully I talk fast! Some of the highlights of my quick pitch are the following. FIRST is the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis and related skin disorders. FIRST has funded 13 projects granting over $1.4 million in research since 2006. FIRST provides information on its website, printed publications, and a quarterly newsletter, Ichthyosis Focus. FIRST hosts a biennial national family conference, and patient support forums which provide families the opportunity to create connections with each other and consult with leading medical experts. Insert breath here! Yes, this is a busy organization.

 

What is a typical day at FIRST? There is not a typical day (is there really such a day in our lives?). The staff at any given time can be creating awareness about FIRST with the medical community, sharing ichthyosis updates through social network sites – you can follow us on twitter at @FIRST_Skin and Facebook, or planning FIRST to Know phone calls, which allow individuals to talk to one another on the phone about related topics. Additionally, we often guide members as they develop international support groups and connect families all over the world who are reaching out to FIRST. The reward in my day is when I hear from a new mom needing an ear and advice from another mom who understands her guilt, confusion and exhaustion, and knowing the support mom can help to make this new family’s transition into the new and unfamiliar world of ichthyosis…just a little easier. Each day brings a new adventure, a new family, and a new story.

 

This is an exciting month at FIRST; May is Ichthyosis Awareness Month (IAM) and we are celebrating this month in many ways. Throughout the month, FIRST will be publishing inspirational stories from the ichthyosis community; everyone has a story, and we are pleased to share these with our followers! Many of our members have organized FIRST Night Out events at a Major League Baseball game in their hometown; what a great way to get together with families and friends to celebrate the month. Fundraisers such as wine-tastings, a ½ marathon, and a dance-a-thon are just a few of the other special events organized for May. The increased effort in awareness is a step towards making this rare skin disorder known to many others and the fundraising efforts will continue to support the important work FIRST does for the ichthyosis community at large.

 

Perhaps, one day when I am asked what I “do”, and I use the word ichthyosis, I will be using my elevator speech differently. My speech will include a few new sentences; ones about better treatments and how close researchers are to a cure for this rare, genetic - with no cure - skin disorder. I can only hope, but in the meantime, I will continue to “do” what I love – talking about FIRST, our great community and the daily, tireless work of so many individuals."

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.