We have many interesting people in our SLA family who are involved in exciting and creative endeavors. With an abundance of great stories to share, we decided it was time to add a new section to our newsletter.
This month, we want to thank our long-time client, Mike Briggs, for his work with FIRST (Foundation for Ichthyosis & Related Skin Types). Ichthyosis is a family of skin disorders, relatively rare, that generally presents at birth and can be quite severe. Mike’s grandson, Adam, was born 16 years ago with ichthyosis. Little was known about the condition or how to treat it. Adam’s skin looked almost like wax paper and the doctors did not know what it was or even if he would survive. Adam’s parents, Mark and Kelly, set out to educate themselves and found FIRST, a very small grass-roots effort that provided good information, but did not have funds to conduct research for a cure. They became very active and, along with Mike, worked tirelessly with to help grow the organization. At this writing, FIRST is now the world’s leading patient advocacy organization dedicated to improving lives and seeking cures for those affected by ichthyosis. Seventeen research studies have been completed thus far, due in large part to the fundraising efforts of Mike’s family.
Adam, is very much a typical teenage kid who participates actively in school and activities. He particularly enjoys photography, video games and hanging out with friends. Adam does not allow his disability to define him, but he must deal with the reality that his body makes too much skin, particularly on his hands, feet and elbows, then sheds it off. The extra skin makes walking difficult, which is problematic in changing classes in school. Sitting on a hard wood seat for extended periods of time is difficult. With no pores due to the disease, Adam experiences great discomfort in both hot and cold weather. Management of his condition involves an hour of self-care daily, which is a lot to ask of a busy sixteen year old.
Adam traveled several times in past years to Denver with his parents and grandparents to participate as a subject in exciting stem-cell research conducted by Dr. Dennis Roop at the University of Colorado. A cure does not yet exist for Adam, but progress toward this goal was made and FIRST funded research continues.
Most people are not familiar with ichthyosis until they or someone they know are personally affected, as was the case with Adam’s family. FIRST is an outstanding organization that provides support, education, community and hope to families through its extensive website, national conferences, patient support forums, FIRST to know calls, ongoing research and more.
Mark and Kelly remain passionately involved through fundraising and communication with newly afflicted families. Mike served on the board for a 10 year term and brought Larry Silverman into the fold to serve as treasurer a few years ago. Larry is thrilled to be a part of this amazing organization and enjoys giving back to the community in a meaningful way by donating his time and financial expertise.
Check out the FIRST website for more information: http://www.firstskinfoundation.org.