FIRST & Foremost: The Power of Personal Connection with Program Director, Moureen Wenik

As the global leaders in ichthyosis advocacy, it is not only our job to bring public attention to this rare condition and to campaign for the advancement of better treatments and an eventual cure, but to also embrace those living with ichthyosis, today, and to help them live the highest quality of life possible.

Time and time again, we are inspired by how a simple one-on-one connection with another affected family, a physician specializing in ichthyosis, or a caring staff member of FIRST, can transform perceptions, often altering the entire future for an affected individual. I recently sat down with Program Director, Moureen Wenik, a seven-year veteran of the FIRST organization, and the individual who has likely witnessed these “moments of connection” more than anyone else in the community. Moureen oversees our Regional Support Network (RSN), where she communicates daily with members around the globe, connecting patients to ichthyosis medical experts and affected families in their region, as well as developing and managing national member meetings, ichthyosis social media groups, and bi-weekly topic-driven conference calls. I asked her to share her thoughts about those special moments of connection, why they are so important, and how we can ensure that these opportunities will continually be available to all those affected.

Q: In your opinion, what are the most important benefits of the Regional Support Network for the ichthyosis community?

A: The ichthyosis community is a small and very close knit community. I have witnessed the relief people feel when they have someone to talk to who really understands what it is like to have a child with ichthyosis, or be an affected adult.  It is great to talk to someone who “gets it” and doesn’t have to explain ichthyosis.  The RSN provides a safe place for families to connect, whether through social media, by telephone, or face-to-face at a meeting.  Often they have never met another person who shares the disorder. The feelings of isolation for new moms, parents of children with ichthyosis, or affected teens or adults with ichthyosis, can be overwhelming.  A support network gives people the opportunity to talk to others who have experience living with ichthyosis and to share their feelings with others who understand.

Q: What can be expected at an RSN event?

A: FIRST has a number of RSN events that our members are encouraged to attend.  Twice a month FIRST hosts FIRST to Know Calls.  These conference calls provide the opportunity for individuals to talk with one another about a specific topic, such as skin care tips, a specific type of ichthyosis, or other relevant topics.  Our face-to-face meetings, held each year, offer a more personal experience.  On even years, the FIRST National Family Conference is held.  This 3-day event is a life-changing experience!  Imagine living in a world where nobody looks like you and you couldn’t identify with anyone.  Then you attend a conference and see people who have the same skin as you – life-changing indeed!  Affected children and adults can come together for a weekend, and not have to worry about what people will say about their visible difference, and parents aren’t approached with unwanted stares or comments because there is an unspoken understanding.  Everyone is at the conference for the same reason —they have a common bond.  The conference includes medical sessions, breakout sessions on parenting topics, skin care and many other areas of interest.  The opposite years of the FIRST National Family Conference, one-day Patient Support Forums are held.  These meetings include a medical session, followed by a breakout session.  There are typically four Patient Support Forums held throughout the United States on the odd numbered years.  These meetings, much like the FIRST National Family Conference, is a great opportunity for individuals to come together and meet one another while learning about treatment options and how to manage their skin, plus other issues affected by ichthyosis.

Q: Is there a particular instance of a life-changing connection, in-person or otherwise, that was made through the RSN that stands out in your mind?

A: It feels like every time I connect families and individuals it is life-changing for them.  One particular connection, which stands out in my mind, was a family with a young affected daughter.  They had searched endlessly for what was wrong with their daughter, and had received many wrong diagnoses. When the mom contacted me at FIRST, suspecting her child had ichthyosis, I connected her to a family who also had a young affected child.  The families live in different states, but they travel to see each other as often as possible, and keep in touch through social media as well.  When the mom called FIRST to update me on her daughter, I could hear the relief the mom felt when they finally had a “name” for her child’s disorder and a friend who truly understood the daily challenges she faces.

Q: How is the program funded?

A: The RSN is just one of the many programs funded by FIRST. The organization raises its operating funds through individual donations, corporate appeals, fundraising events, United Way and CFC donations, and private grants.  FIRST does not receive any governmental funding; it is solely funded by individual and private donations.

Learn more about Moureen and FIRST at their website here.