To raise awareness of ichthysosis and funds for research, Brian Gass of St. Louis is hiking the Pacific Crest Trail – 2,600 miles from Mexico to Canada, crossing the Sierras, over about 110 days. The 21-year-old college student has the rare genetic skin disease, as do three siblings. The experienced hiker and is traveling alone on the journey, begun on April 24.
Brian's type of ichthyosis affects 1 in 100,000 people. His trip is more difficult because of ichthyosis: he sunburns and overheats easily; can have problems regulating his temperature and calorie intake and staying sufficiently hydrated; and his range of motion can be affected.
May is Ichthyosis Awareness Month (IAM). During this month, families and friends of people affected by Ichthyosis raise awareness by hosting grassroots events in their local community and, if possible, raise funds for ichthyosis and FIRST programs.
During May and throughout his entire 110-day hike, Brian is blogging and posting video of his journey online. He wants to serve as an inspiration to other people with limiting diseases and conditions, especially young people with ichthyosis: "Do what you love first and your skin will follow."
Brian is raising funds to pay for his trip – gear, food and expenses – and for the Foundation for Ichthyosis and Related Skin Types (FIRST). He is splitting every dollar raised 50/50 with FIRST. His goal is $12,000, and at time of writing, he has raised $3,010. After the goal is met, 100% of the funds raised will go to FIRST.