SANTA FE — It’s all fun in the name of a worthy cause as people pour ice-cold water over their heads in the name of research to battle amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease.
Patricia Sehorn knows another side of ALS, the pain of seeing a loved one taken by the disease. Still, six years after her husband, Dennis, succumbed to the always-fatal disease, she sees the promise of the ice bucket challenge effort.
“It is awesome,” the Tiki Island resident said. “I think the awareness the campaign has generated is a wonderful thing.”
Hollywood stars, former presidents, NFL stars and everyday people have taken to social media to dump bucket after bucket of ice-cold water in the name of donating to and challenging others to donate to the ALS Association.
According to the latest figures from the ALS Association, $41.8 million had been raised as of Thursday because of the viral video campaign.
The ALS Association has since 1985 spent more than $99 million in research and clinical management projects with 100 active research projects underway.
Families need help
Research is great, and needed, Sehorn said. But battling ALS goes beyond finding a cure.
“Families have a real need,” she said. “The burden it creates for families is tremendous. Financially, emotionally and physically. I hope we can ride the coattails of the awareness so we can help the families.”
In 2011, Sehorn created the Dennis Sehorn Foundation that provides financial support so families can help care for a loved one who is battling ALS.
“We have three families we are helping each month,” she said. “It helps pay bills and other needs and to pay for caregivers.
“It’s the cost of a caregiver that can wipe a family out. By the time we get involved, a caregiver is needed 24/7.”
Often when someone is diagnosed with ALS, either most or all of the income stops because he or she can no longer work. It doesn’t take long before around-the-clock care is needed.
Dennis Sehorn was diagnosed in 2004 and by 2005 could only breath with the assistance of a portable ventilator.
“Once someone has to go onto the ventilator, that is when the around-the-clock care is needed,” Sehorn said. “You become a respiratory therapist, nurse and always are on call.”
It is the type of care that often a spouse or other family members are unable to provide because of the skill set required and the financial burden.
“We were lucky, we had our own business in Houston, so that afforded me the ability to care (for Dennis),” Sehorn said. “Not everyone has the ability.”
In part, an ALS fundraiser scheduled for this weekend by friends of Santa Fe resident Josh Butler is aimed at helping fund research as well as assist Butler’s family.
Butler, a star point guard for the Santa Fe High School boys basketball team that advanced to the state finals in 1996, was diagnosed with ALS in 2010.
He was 32 then. He had worked as a financial analyst in the space program but made the jump to teaching and coaching and his wife, Jennifer, was expecting their second child.
Longtime friends and classmates launched a fundraising effort to help meet his needs. That continued with the creation of Team #StrongWhenWeak, an 11-member running group of which Butler is the honorary captain.
One of the members is Tim Bass, whose wife, Mary Bass, is the executive chef at Haak Vineyards & Winery in Santa Fe. Snatching onto the online video craze of ice bucket challenges, Mary Bass asked the team to take part in the winery’s concert event Saturday to raise funds.
Of course, to promote the event, members of the winery staff, including owner Raymond Haak shot their own ice bucket challenge video Thursday morning. Instead of a bucket, they loaded a bin that usually carries half a ton of grapes with about 300 gallons of ice and water.
With that, Bass challenged the winery’s customers to come out Saturday, purchase Team #StrongWhenWeak wristbands and will do their own challenge.
Bass said the winery will — for a $10 donation — provide a children’s pool, bucket of ice water and record you doing your own challenge.
Officials encourage those completing the challenge to bring a towel and a change of clothes.
Also Saturday, the staff of On the Bayou in Galveston plan to do their own challenge that owner Doug Thomas will get other businesses along 61st Street involved.
While a trend this past month, the ice bucket challenge is not anything new.
In June, San Leon Volunteer Fire Department Chief Jeff Pittman did a challenge and called out members of the Galveston County Commissioners Court to donate to the Fallen Firefighters Foundation.
Texas City Police Chief Robert Burby took the challenge and donated to an effort to raise funds for an injured La Marque police officer.
Members of the Galveston Police Department were among the first in the area to record an ice bucket challenge to raise funds for the Officer Down Memorial.
- Go to the The Daily News’ Facebook page to watch the Haak Winery ALS Ice Bucket Challenge video.
- Also, post your own ice bucket challenge videos to Twitter or Facebook and include the hashtag: #galvnews.
At a glance
WHAT: Haak Vineyards & Winery Concert and ALS Team #StrongWhenWeak fundraiser
WHEN: 7 p.m. Saturday
WHERE: Haak Vineyards & Winery, 6310 Ave. T, in Santa Fe
WHAT: The Dennis Sehorn Foundation
EFFORT: Raises funds to support families with loved ones with ALS
ONLINE: Dennis Sehorn Foundation for ALS: www.als-sehorn.org