ALS Breakthrough at the University of Utah Could Be a Game-Changer for Patients

By Heather Simonsen on KSL.com

Seth Christensen’s computer tracks his eye movements so he can type like he used to, before ALS, commonly called Lou Gehrig’s disease, began stealing his abilities seven years ago. After an active life with four kids, the Christensen family’s youngest is just a baby. The diagnosis was devastating.

“We had to practice breathing in and out,” said Amy Christensen, Seth’s wife, who lives in Holladay with him and their children. “It really rocked our world.”

ALS is taking away his ability to move and think.

Jean Corlett of Sandy has a similar brain disease called ataxia. “I was always losing my balance and I had a pain in my back,” Corlett said.

Once an avid hiker and skier, Corlett can barely walk with a walker. And there are other problems. “Swallowing, choking, I’m always choking,” she said.

Scientists at the University of Utah believe they can help people like them. “We treated the mice at eight weeks which is right when we consider disease symptom onset,” said Daniel Scoles, PhD, associate professor of Neurology at the University of Utah.

They developed a therapy that slows the progression of the diseases in mice by targeting the ataxin-2 gene. The scientists injected the rodents with small snippets of manufactured, modified DNA called antisense oligonucleotides.

Dr. Stefan Pulst, chair of the Department of Neurology at the University of Utah, said, “These are molecules, pieces of DNA, that target a specific message in the cell and through complex mechanisms destroy that message. In many ways like a magical bullet or a seek-and-destroy kind of approach to diseases.”

The Christensens are cautiously optimistic about the discovery. “It’s hard to put your heart and your hope out on the line again,” Amy Christensen said. “I do know that there’s a little boy at my house who prays every night for those doctors and researchers to find a cure.”

Along with alleviating ALS and ataxia symptoms, researchers say it could reverse or bring back some abilities. “We saw that we could halt the progression of the motor deterioration and we could also revert the changes in the specific proteins and, even more amazingly, in the firing of the nerve cells,” Pulst said.

The hope is that in time the compound will be given as spinal injections in patients. It stays in the brain for a long time. Scoles said, “We can treat the mice one time and for weeks and weeks, we see a therapeutic effect.”

That’s good news for Corlett, who misses her active life in the outdoors, but whose disease is advanced. “I’m hopeful, not for me, but for other people,” she said.

Seth Christensen has already surpassed ALS’ average 2-5 year lifespan. The Christensens are not giving up hope. “Of course we want that, and it would be amazing,” Amy Christensen said. Life for them now, with Amy as Seth’s caregiver, is all about endurance. And cherishing every precious moment.

Scientists say the discovery may lead to advances in other neurodegenerative diseases like Alzheimer’s and Parkinson’s. They hope to start clinical trials in 5 years.

Riding for ALS Update: Semi Hits Cyclist Support Vehicle

Michael Conti spent a year and a half preparing for the Race Across America.  He was riding to fulfill a childhood dream and to raise funds for ALS Crowd.

Just outside of Alamosa, Colorado on June 17 his ride came to an abrupt end after a semi truck rear ended the cyclist’s support car.  Michael was not hit, but three crew members including his daughter, were taken to the hospital and observed for the night.  The vehicle and bike gear are a total loss.

At the time of the crash Conti was in 7th place overall,  was the top American racer, and had already covered over 800 miles.  He is processing the abrupt end of his dream with a positive attitude and a sense of gratitude that the people he loves are still around.

As part of the ALS community, we recognize the difficulty of having circumstances beyond our control change personal plans and shatter dreams.  ALS has done that for many of us.  But it also puts our priorities in perspective of what really matters most; to love the ones you have while you still have them.

We are grateful for Michael Conti’s hard work and his efforts to race to end ALS.  The Race Across America to End ALS fundraising campaign will be open until July 15.

Haircuts & Hot Rods–Salt Lake City Car Show to Benefit ALSCrowd

The 1st annual Blues Barbershop Car Show will take place on September 19at Holladay City Hall  (2300 E. 4650 S. in Salt Lake City) with all proceeds benefiting ALS Crowd. The event will include t-shirt sales, live music (including Ryan Innes from NBC’s The Voice), concessions, family activities, and new and classic cars. Sponsors are invited to co-brand merchandise, show corporate cars, have a booth, and are encouraged to provide fundraising/ matching challenges during the event. Contact Christi Wedig, Blues Barbershop, at: 435-773-7031

WATCH THE KSL STORY HERE

DONATE HERE

 

“Life’s Miracles” Documentary

ALS Crowd Co-Founder and Executive Director Seth Christensen is featured in a 30 minute documentary about his goals for ALS Crowd to cure the disease. Learn more about his “Project” to make a difference for all ALS patients.

The ‘End ALS’ Camaro Project

Camaro - Sam begins work (on camera)

Seth and his his 13-year-old son, Sam, are working to transform a 1968 Chevy Camaro into the “End ALS Camaro” – a symbol of the fight against ALS: with vision, hard work, and collaboration with a wide variety of talented and resourceful people, an old vehicle can be transformed into a cutting-edge, high performance version of a celebrated classic. Click here for more information!

ALS Crowd interviewed by Doug Wright

Seth and Amy Christensen, and Paul Ahlstrom, were interviewed by KSL 1160’s Doug Wright on Thursday, October 2, 2014. Click here to listen.

Cyclist to solo 423 miles in 26 hours raising $ for ALScrowd.org

Mike Conti’s S2S Ride

On Sept 19th Mike Conti of Park City, Utah will be racing from Salt Lake City to St George to raise awareness and money for ALS.  “Soloing” the Salt-to-Saint relay, a race typically ridden by eight-rider teams, he will ride 423 miles non-stop with a goal to complete the race in 26 hours.

“My goal is to raise $10,000 with all proceeds going directly to ALS Crowd” says Conti.  ALS Crowd is a division of the CrowdCare Foundation, a Utah based non-profit founded by ALS diagnosee Seth Christensen. It was created to help educate and empower ALS patients and to close the gap between ALS patients and ALS doctors/researchers. The Salt-to-Saint relay, founded by Christensen’s brother Clay, has aligned itself with the ALS Crowd, and Conti is “all in”.  Says Conti, “I believe in what they are doing and that is why I’m riding my bike non stop for 423 miles.”

This is not Conti’s first foray into long-distance cycling or ALS fundraising. Earlier this year he rode 517 miles from Salt Lake City to Las Vegas in a race called Saints-to-Sinners, raising awareness and more than $10,000 for ALS.  He is also Salt-to-Saint veteran, having ridden as a member of a relay team in 2012 and making an unsuccessful solo attempt in 2013. According to Clay Christensen, “Mike is an extraordinary example of the type of rider the Salt-to-Saint attracts…disciplined, life-loving, and a little crazy.” Says Seth Christensen, “We are thrilled to have Mike ride for ALS Crowd. His ride embodies the determination and Herculean effort needed to bring an end to ALS.”

Those interested in contributing to and following Conti’s ride can do so at: http://www.gofundme.com/S2Ssolo . Says Conti, “I ride for those given the death sentence of ALS. Please support me in raising both money and awareness.  If you did the #icebucketchallenge and didn’t donate then this is your time to step up and donate.  You will get good karma credits.”

Links

http://www.alscrowd.org

http://www.gofundme.com/S2Ssolo

Utah Legislature & Public doing LARGEST ICE BUCKET CHALLENGE yet!

What an amazing experience the Ice Bucket Challenge has been! Those of us living with ALS have been overwhelmed by the interest, compassion, and generosity that has been “poured out” over social media over the last month.
 
I want to personally invite you and your family, whether you have done the challenge or not, to join together in the largest gathering of ice-bucketeers yet: on Tuesday, August 26, beginning at 4:30 PM on the front lawn of the Utah State Capitol, PLEASE join me, the Utah Legislature, multiple ALS charities, corporate donors, and local TV stations as we join together to bring an end to ALS!
 
What you need:
  • a bucket
  • the name of someone to challenge
  • a phone or other video recording device
  • ANY donation you wish to bring  (cash or check are appreciated)
Ice will be provided for the first 1000 people by Associated Food Stores
Water will be administered by the Salt Lake Fire Department
The first 100 donors of $100 or more will receive a bucket compliments of The Home Depot
 
What we need:
  • YOU!… In attendance!
  • Promotion: please invite everyone you know including teams, businesses, coworkers, congregations/wards
  • Donors: please consider giving or giving again… especially you business leaders. This is an incredible opportunity to offer “matching” challenges
Please spread the word! Look for any updates on www.facebook.com/ALScrowd
 
All my gratitude,
 
Seth Christensen
ALS diagnosee since 2010
Co-founder: ALScrowd.org
Twitter: @ALSCROWD

ALS Crowd on KSL News

Hear about Seth Christensen, his fight with ALS and his decision to make a difference in ALS research.