“More Than Skin Deep” Eczema Initiative

The other month, I was fortunate enough to attend the Eczema Expo in Scottsdale, AZ.

Differing eczema experiences

The first thing I participated in - the Corporate Council Patient Perspectives Roundtable - ended up being one of the most impactful moments for me during Expo. There were six of us warriors on the panel, each with a different story. From a mother watching as this condition slowly ate away at any notion of a normal life for her child to a beautiful warrior who had to weigh out the pros and cons of once again resorting to Prednisone to get her through her wedding week.

A life with eczema

We answered the questions asked by the board of the NEA, in front of a room full of representatives from the big pharmaceutical companies. There were about 25 of them and 6 of us. Emotions filled the room as each of us shared details of the battles we have fought - some of us for a few years, for many- our entire lives.

Sharing skin stories

After we wrapped up, all I could think of was just how fortunate I was to have been able to participate in something like this. I would share my story like that for every single day for the rest of my life if it meant that other warriors here at home and around the world would somehow benefit. And maybe sharing our stories will even help in finally figuring out a cure. All I could think was, wow, if only this could be available to everyone.

More Than Skin Deep initiative

Well, guess what? Now...it is! Well, at least something incredibly similar! It is called the More Than Skin Deep Initiative that was launched just this past July 31st, right after Expo! The National Eczema Association has partnered with four nonprofits (the Allergy & Asthma Network, the Asthma and Allergy Foundation of America, Global Parents for Eczema Research, and ITSAN) in order to help shape future drugs and devices that cater to the treatment of eczema.

First eczema PFDD

And this is where you come in - if you’ve ever felt that you’ve wanted to share your story, that you’re bursting at the seams with at-times-unbelievable anecdotes about your journey with eczema, there will be a PFDD (Patient-Focused Drug Development) meeting on September 23rd held in the Washington, D.C. area. Caretakers and warriors alike are invited to open up and share their experiences with FDA staff, drug and medical device developers, and other stakeholders to help ensure that the treatments and outcomes address and cater to our needs and concerns.

Participation

If you’d like to participate and attend in person, you can check out the event website here. If you’d like to join in but can't be there in person, you can RSVP to participate in the September 23rd meeting via webcast.

Good luck! I just received confirmation that I was accepted and will be flying out to Washington, D.C.! Hope to see some of you there soon!