May is Ichthyosis Awareness Month!

FIRST Partners with Climb for Hope in Grand Canyon Expedition

Participants at the recent National Conference learned about purpose-driven adventure from keynote speaker, Andrew Buerger. When his sister was diagnosed with breast cancer, Andy got the idea to raise money for research by taking people up mountains. The challenge of climbing a big mountain is an apt metaphor for the struggles of dealing with a disease or chronic condition. In 2018, Grand Canyon crossings were added to the list of endurance expeditions offered through his Climb for Hope organization and are now some of the most popular trips.

FIRST is excited to offer a Grand Canyon expedition in 2023 during Ichthyosis Awareness Month. This trip is certain to also bring awareness and inspiration in the form of stories of perseverance over many miles in challenging conditions.

The trip was originally scheduled as a Rim-to-Rim-to-Rim journey, but due to record snowfall the North Rim of the Grand Canyon will be closed.

In the revised route, participants will cover 16.5 miles a day. The total journey will be 33 miles and 9,300 feet of elevation gain. The group will begin from the South Rim and descend via the South Kaibab Trail, cross the Colorado River, have lunch at Phantom Ranch, then head back via the Bright Angel Trail. After camping overnight on the South Rim, the group will hike back making the journey in reverse, beginning down the Bright Angel trail.

The expedition is not technical but requires excellent physical conditioning. Climb for Hope will provide an 18-week training program similar to a marathon training schedule. The trip is at a higher elevation, temperatures can range from the 70s to 100s, and the distance covered over two days is long.

Spectacular views, a great physical achievement and the satisfaction gained from raising much needed funds for FIRST while serving as a role model for our community will reward participants.

Because of the intense logistics required for this expedition, a $3,000 fundraising minimum is required of all participants. Sponsorship from friends, families, co-workers and companies is encouraged. To learn more details, click here, and please contact Denise Gass at

Use your voice this IAM. What will you do?

May is Ichthyosis Awareness Month (IAM). During May, families and friends around the world join together, use their voices, and raise awareness about the challenges and hopes of the ichthyosis community.

Educating your local community about ichthyosis is important as it can make day-to-day life much easier for those affected. Whether you share educational information with neighbors and coworkers, post on social media or host an event to bring friends together, your efforts to raise awareness contribute to a better experience for people with ichthyosis.

When posting on social media, be sure to use IAM hashtags to amplify your voice. Tag posts with #ichthyosisawareness #FIRST #ichthyosis and #IAM2023.

Are You on Facebook? Twitter? Instagram?
IAM is Global! #ichthyosisawareness #FIRST #ichthyosis #IAM2023


The Cina family created awareness about ichthyosis during 2021 with their interview on their local TV news station.
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