Ichthyosis Awareness Month
Beiersdorf celebrates Ichthyosis Awareness Month with FIRST
FIRST partner Beiersdorf, the makers of Aquaphor and Eucerin, celebrated Ichthyosis Awareness Month (IAM) at their headquarters in Wilton, CT on May 23rd. Christine Wassel, FIRST community engagement director, along with FIRST members Sacha Schenker and Hunter Steinitz and author and dermatologist Andrea Rustad, MD were invited to present topics to 50 Beiersdorf employees to educate them about ichthyosis.
Wassel provided an overview of ichthyosis and how FIRST serves our community. She was followed by Steinitz, who shared what it's like to live with ichthyosis. Schenker provided a live demonstration of yoga with ichthyosis and Dr. Rustad gave a reading of her book, Skin-vincible: A Story of a Superstar with Ichthyosis.
The day ended after Q & A and time for the entire group to interact and learn from each other. Later, Beiersdorf utilized their social media channels to raise awareness and money for FIRST.
Below are the presentations from the day
FIRST looks forward to continuing this important partnership in the years to come.
May 2023 was the first time FIRST combined fundraising and programming in a way that would physically challenge and exponentially inspire and connect our community. Most people with ichthyosis and related skin types sunburn and overheat easily while struggling to sweat. This made climbing the Grand Canyon an especially challenging mission.
The group included 17 people. There were 12 fundraising hikers including four affected members, one affected FIRST staffer, six family members and one dermatologist. They were led by guides from Rare Earth Adventures and Andy Buerger, who advised the expedition.
The hiking team assembled from across the country beginning in the fall of 2022. Slow and steady, they began planning, fundraising and training. They ranged in age from 10 to 62, with a diverse range of fitness.
The first challenge was filling the group. FIRST wanted to fill the capacity of 12 spots but was prepared to share the expedition with another group if necessary. By the end of December 2022, all 12 spots were filled with people wanting to hike for FIRST and who agreed to meet the fundraising minimum of $3,000 per person.
The next challenge was meeting that fundraising minimum. Some participants were experienced fundraisers while others were learning the basics for the first time. Participants created their own fundraising page and set about emailing, texting, posting and talking about their mission to their networks. Their fundraising efforts reached far and wide, spreading awareness of ichthyosis and bringing messages of hope, dedication and community support. The leading fundraiser was Sarah Aughenbaugh, mother of Victoria - affected with ARCI-lamellar ichthyosis, who raised more than $12,600. Ultimately, the hike raised more than $45,000 for FIRST!
Then, the challenges grew more specific to the hike itself. In mid-May, the National Parks Service announced that the North Rim of the Canyon would not reopen in time for the trip. This meant the guide team had to re-route the group to stay at the South Rim. The group originally planned to go from one rim to the other, and back again. The new route would be shorter, but still grueling.
FIRST was committed to making the hike as safe as possible, with all potential planning and precautions taken for those hiking with ichthyosis. The FIRST Medical and Scientific Advisory Board conferred on topics such as blistering, electrolytes and hydration. FIRST worked with Rare Earth Adventures to explain the ins and outs of life with ichthyosis, and to ensure all guides were prepared to support the team. The guides and hikers connected remotely to prepare, discussed details upon arrival in Arizona, and then worked throughout the hike to constantly monitor and support all those hiking.
Twelve FIRST members, ranging in age from 10 to 62, comprised the team: Sarah Aughenbaugh, Jackie Barrett, Rick Barrett, Cheryl Bayart, Sean Cina, Denise Gass, Rylee Iott, Hugh Keenan, Lisa McTernan, Sean McTernan, Bob Wagmiller and Will Wagmiller.
In addition, three FIRST members fundraised from home in support of the mission: Sheila Boardman, Jane Goff and Beth Hampshire.
Tips from the canyon
“We got started at dawn to maximize trail miles before the hottest part of the day.”
-Connor Henzel, lead guide
“Will wore a cotton t-shirt under his UPF shirt. We soaked both because cotton stays wet and cool longer than wicking fabrics, while the UPF shirt provides strong UV protection.”
-Bob Wagmiller, father to affected son Will, age 10, both hikers
“During training, I noticed my heartrate and conversational ability indicated when I was approaching overheating. I watched my heart rate and communicated it to the guide I was hiking with. After a few hours of this, he was able to infer my heart rate from his own, and when our conversation died down, he knew we needed shade and a break.”
-Denise Gass, affected hiker and FIRST staff
On May 20, the hikers and guides all flew to Phoenix from across the country. Packing into three vans, the team drove to the Grand Canyon campground where they bedded down in tents by pairs. The two-person tents were a challenge, with Sean Cina joking “I don’t sleep this close to my wife!”
The first day of the hike, May 21, the guides rose at 3 am to start coffee and breakfast. By 4 am, the hikers were all awake, lacing boots and applying sunscreen in the dark. It was about 45° but would later climb to near 100°. After a quick breakfast and a ride to the trailhead (blaring “Eye of the Tiger”), the group descended into the Grand Canyon. They each carried trekking poles and wore backpacks with at least three liters of water, snacks and sunscreen. One hiker carried the names of her donors, another carried artwork from her kids, and another carried the group’s #IAM23 flag, worn like a cape.
Unfortunately, within the first mile, Jackie Barrett rolled her ankle resulting in a fracture and an early departure from the trail. The bad luck in getting injured so early was mitigated by the fact that she had just a “short” trek out of the canyon with a guide after pressure wrapping her foot.
The rest of the group journeyed on, moving into three different pace groups. The route was a total of about 18 miles and descended via South Kaibab trail for 7 miles of descent. At the bottom of the canyon, the group traveled 1.5 miles of flat trail crossing the Colorado River to Phantom Ranch, a tiny remote spot to buy a postcard and lemonade. After a brief respite, the hikers returned across the river and up Bright Angel trail. The last leg was a grueling 10 miles uphill. The afternoon high temperature was around 100° with direct sun.
No one suffered overheating, heat exhaustion or even sunburn!
Heat and sun precautions were many. Guidelines while hiking included drinking a liter of water per hour and applying sunscreen every hour. Beiersdorf sponsored the hike and provided SPF products for face, body, and lips. The hikers were careful about clothing choices, as well, with many wearing sun-protective shirts, long pants, and wide-brimmed hats. Coolibar generously provided long sleeve shirts. To manage the heat, the group doused cooling towels, hats and shirts in streams and even in hydration bladders. Special thanks to Frogg Toggs for providing cooling towels and Heliocare for providing sun protection supplements.
Several water spigots along the route were closed, meaning the hikers had to plan in advance and carry more water than usual. Finally, the hikers were advised to bring snacks amounting to about 200 calories per hour.
Other physical challenges included blisters, asthma, altitude adjustments, cramps, fatigue, chafing and more. Of course, there were immense mental challenges, as hikers pushed up against their limits and faced fears. For many of them, it was their first time moving at those inclines for that length of time. Some listened to headphones, while others engaged in moving meditations to pass the time.
During the trek, ichthyosis was top of mind. The affected hikers were keenly aware of the additional challenges ichthyosis posed to their trek and remained vigilant about safety precautions. The family members on the hike contemplated anew the challenges facing their loved ones. A dermatologist on the trip, Dr. Cheryl Bayart, commented about how inspired she was to witness the perseverance of the whole group. In particular, the triumph of the affected individuals moved her, as she recalled counseling new families afraid their children with ichthyosis would never be able to play sports.
The first hikers exited the canyon in just over 9.5 hours. The last of the group finished in about 15 hours. Upon leaving the trail, each hiker was greeted by others on the team with cheers, high fives, and memories to last a lifetime.
The second day, the group was given options to do the same trail in reverse, or hike and sightsee around the rim. Two intrepid hikers journeyed back in the canyon for another grueling day. The other 15 people hiked several miles around the canyon and learned about the history of canyon geology and indigenous peoples of the region.
As hiker Sean Cina wisely surmised, the trek was a testament to the three pillars of FIRST’s mission – educate, inspire, and connect. The staff and board at FIRST applaud the efforts of the hikers in taking forward the mission of FIRST!