St. Louis Air Freight Entrepreneur and Missouri Aviator Share Hope for Those Affected by ALS
Shared experiences and online connections to ALS brings two Missourians together in-person to launch a dogfight against the neurodegenerative disease.
Today marks the ten-year anniversary of the Ice Bucket Challenge, the viral video challenge that taught the world how to put viral video challenges into service for a charitable cause. The International Alliance of ALS/MND Associations celebrates June 21st as “the global day of recognition of ALS/MND” in honor of the Ice Bucket Challenge, the impact of which raised almost $200 million in donations through 28 million people uploading and engaging with videos from 159 countries.
Marking the five year anniversary, a 2019 press release, asserts that the success of the Ice Bucket Challenge, enabled the ALS Association to increase annual funding of research into the disease by 187%. The impact assessment from RTI International reports that the social media challenge helped generate continued and sustained funding in the years following, especially through NIH grants.
Online Support Networks for ALS Create In-Person Connections
In St. Louis, Carl D. Essen, a long time member of Venture Cafe St. Louis has been connecting with families impacted by ALS across the globe. By attending Zoom meetings hosted by online communities that are supporting people living with ALS all over the world, he has met people who have been able to manage with the condition far beyond the typical life expectancy of 12-18 months (or 2-5 years, in the case of early detection).
Freddie E. McClurkin, a former US Marine and retired commercial pilot is one of those people. At 75 years-old, he has been living with the ALS condition for 12 years.
Earlier this month Freddie drove to St. Louis from his home near Kansas City, Missouri to attend the Spirit of St. Louis Air Show, and meet Carl for their second in-person meeting since connecting online. Last year, at the same airshow in 2023, Carl watched Freddie, “climb onto the wing of a P51 Mustang, get in the cockpit and fly.”
For people who have experienced ALS and know what this condition is like —themselves or as a caregiver— Carl says what he saw at both airshows demonstrates that there is future hope for sufferers of this neurodegenerative disease: “Freddie is now driving cars and walking wings.”
Virtual Travels Through Venture Cafe’s Global Network
Two years ago, on September 13th 2022, Carl lost his companion, Arlene Rosengarten, to ALS. In the face of his own tragic loss, he says that there is hope for those living with the ALS condition, despite the fact that there is no known cure or direct treatment for the auto-immune disease.
Arlene introduced Carl to Venture Cafe in St. Louis, and between them they have attended nearly 850 gatherings hosted all over the world. During the pandemic, when lockdown forced events to go virtual, Arlene and Carl used the opportunity to “travel virtually” through Venture Cafe’s global network, by attending meetings hosted by cities across the U.S., such as Providence (RI) and Miami (Fl), and even internationally too.
From Tokyo to St. Louis, Arlene’s Entrepreneurial Journey Cut Short By “Sporadic” Diagnosis
In 2020, at Venture Cafe Tokyo, Arlene and Carl met Eddy Mika-Kurosawa and Bartosz Ziolko, and the four of them joined forces to develop a startup concept called ‘botlator.’ Short for “Robot Translator”, botlator was an AI-enabled voice assistant that could synthesize anyone’s natural voice, such that it could be used in a text-to-speech system.
Initially their application seemed promising for personalizing voices for call centers, such that responses could be typed rather than spoken. However, as the product developed, a greater and more humane purpose emerged: perhaps this technology could be used as a device to help people who had lost their voice due to medical conditions such as a stroke.
Sadly, in 2021, Arlene was diagnosed with ALS. Deteriorating rapidly, she lost the use of her voice. Looking for support, Carl and Arlene joined many online communities to learn how to cope with the condition and they put the botlator project on hold.
“We weren’t looking for a cure for ALS, we were just looking for solutions to live with ALS,” Carl told EQ. On a weekly basis, they joined massive Zoom meetings, with over 200 people attending virtually.
Arlene Meets Freddie
At one of these meetings, Arlene met Freddie, the retired pilot. They met three times a week on Zoom, and “talked” to each other by typing responses through the text chat interface, sharing “solutions” for living with ALS, that each of them were learning through these different online support communities.
Although their conditions were similar when they met on Zoom, “Those conversations with Freddie had a positive impact on Arlene, I felt like she was starting to reverse her ALS,” Carl told EQ. “She used her hands again, and could speak a few words when talking to three people on Zoom calls with ALS.”
“Although I lost Arlene, there’s solutions for people with the ALS condition. That’s what I am seeing. I’m not a medical expert, but there’s research shared within these support communities —research coming out of the UK and Ireland— that suggests that mindfulness may play a part in improvements. Anything that can help reduce mental stress, calm emotional reactivity and foster a sense of peacefulness. Even mindfulness among carers for people with ALS, can make a difference.”
Raising Awarness ALS Among Veterans and the Aviation Sector
While the challenge of living with ALS brought Carl and Freddie together to help Arlene, both naturally share an interest in planes and aviation.
This year, Carl joined the Spirit Air Show to help Freddie gain 1000 signatures on a petition to fly with the Blue Angels. To get the chance to fly in the back of an Boeing F/A-18 Super Hornet, only requires 1000 signatures, but Freddie wants to muster 100,000 in order to raise awareness for ALS among pilots.
“I am a nonprofit seeking to raise awareness of the higher rate of ALS in the U.S. military,” Freddie told EQ in a text message. “I have lost two others from my unit to this disease. My primary goal is to educate the military about the increased ALS threat in the military and aviation.”
After flying Phantom F4’s in the US Marines, Freddie was a commercial aviator for 30 years with Tiger Air Lines (which merged into FedEx a Direct Air Carrier) and Carl is closing in on 30 years in freight forwarding with Team Air Express (an Indirect Air Carrier under Kurt D. Anderson Manager of St. Louis Depot of Team Worldwide).
Although ALS is not contagious and only 5-10 percent of cases have been linked to family genetics, research has shown that the incidence of ALS is higher in Veterans, despite 90-95% of cases being defined as sporadic (i.e. of unknown cause). Together, Freddie and Carl’s hope is to raise awareness of ALS within the aviator community at large —and share their hope with the ALS community that there are solutions for a person to live a long life with the condition, a decade after the Ice Bucket Challenge.
CLICK HERE: If you’d like to sign the petition for Freddie to “Fly With the Angels”