ALS IN THE HEARTLAND’S ANNUAL WALK IN OMAHA MOVES TO BAXTER ARENA;
FEATURES VERY SPECIAL HONORARY CHAIRS
ALS in the Heartland excitedly announces their Annual Community Walk in Omaha is moving inside! The festival will be held at Baxter Arena on Sunday, April 29th to raise support for people living with ALS (Lou Gehrig’s Disease).
Over the last several years, the event was outside, and those who braved venturing out for it battled rain, sleet, and even snow. For the last two years, most activities were sheltered by sponsor BlueCross BlueShield of Nebraska’s parking garage; but that still didn’t protect attendees—including ALS patients—from freezing temperatures. But this year, thanks to gracious support from Baxter Arena, attendees can forget about the weather and focus on making memories and raising awareness for the cruel disease.
With ALS (Amyotrophic Lateral Sclerosis), a person maintains their mind, but progressively loses control of their body. There is no treatment nor cure, and patients almost always die within two to five years. ALS in the Heartland provides "support for today and hope for the future" by providing step-by-step guidance, equipment, respite for caregivers, and much more to patients and their loved ones--all free of charge.
Tragically, there is much support needed, as many people living in Omaha and surrounding areas are impacted by the disease. One family has a particularly unique and heartbreaking story.
In 2013, Jeff Engel had a hip replacement and then a cervical fusion. For the next 18 months, neither physical therapy nor anything else Jeff and his wife, Dana, tried helped Jeff achieve full recovery. Says Jeff, " I was unable to play basketball with my grandkids or participate on my tennis league due to my orthopedic issues. After attending a Creighton basketball game and walking to (the) parking lot after the game, it was evident that I needed to see a doctor."
In June of 2016, after a "battery of testing," Jeff and Dana knew the prognosis was dire when a Mayo Clinic doctor sat in front of them speechless. Dana remembers, "Everything seemed like it was in slow motion...I finally said, 'So what do you think it is?' He said, 'I think it’s ALS.''
Incredibly, there was more devastating news ahead. Dana's brother, Peter Laustrup, and his wife, Mary, were about to embark on a parallel journey.
By August of 2016, Mary started having trouble walking. Mary recalls, “…I noticed when I walked in a certain pair of sandals, my right foot was not able to keep the sandal on properly.”
At first, Mary was told she had drop foot, but doctors were “scratching their heads” trying to figure out the underlying problem. A gamut of tests, physical therapy, and a slew of medical experts could not offer answers nor much help. Says Mary, “They had no idea what my problem was but assured me it was not fatal.”
They were wrong.
“After 13 months of medical appointments with orthopedists, 2 more EMGs, MRIs and three neurologists, I was told on December 14, 2017, I had ALS.”
Says Mary's sister-in-law (Jeff’s wife), Dana, "...The news was unbelievable. My first thought was, 'This can't be happening.’”
What makes the Engel/Laustrup case especially peculiar is that ALS is not contagious. Almost all cases are sporadic, with only about 5% being genetic. (And, even at that, Jeff and Mary aren’t blood relatives; they’re simply married to siblings.)
While there is still much to be unraveled about the mysterious illness, people with ALS need help in the meantime. ALS in the Heartland was started by patient families nearly 12 years ago to assist people right here, right now. The organization is not funded by, nor affiliated with, a national association; therefore, all funds raised by ALS in the Heartland remain in Nebraska and Iowa to solely and immediately support people in those states.
Jeff says, "We...found support at (ALS in the Heartland), who helped us with strategies to deal with the diagnosis. They had education seminars helping us learn about treatments and trials that would be available to us. With all of the negatives associated with this disease, it is comforting to know the number of professionals dedicated to...dealing with the effects of ALS."
ALS in the Heartland is able to continue such offerings thanks to support raised at events like their Annual Community Walk in Omaha. The Walk is really a festival – with games (for kids and adults), a live band, vendors and giveaways, a raffle, and buffet-style food. This year, the Engel/Laustrup family will be the Honorary Chairs at the April 29th event.
All ages are invited to register, create a team, join an existing team, or donate resources. To get involved or send your support, visit http://alsintheheartland.org/news-events/.