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Thank you for showing interest in the Jacob Hoops Memorial 5k. Jacob passed away on November 2, 2011 at the age of 8 from a disease called Adrenoleukodystrophy. ALD is a genetic disease that affects approximately 1 in 17,000 boys. It is a neurological disease that damages the insulation around nerve cells in the brain. The Jacob Hoops Memory 5k will serve to honor Jacob's memory, raise awareness of the disease so that testing and treatment can be improved, and raise funds that will directly contribute to ALD research. Registration proceeds will be directed to the ALD research team at the University of Minnesota. The U of M is one of the few places in the United States that specializes in ALD research and treatment.
The 5k route will be rectangular using 8th St S, 22nd Ave S, 20th St S, and 17th Ave S in Brookings, SD. Runners will start at the East St Thomas More parking lot entrance on 8th St S. Runners will start out heading west on 8th St S to 17th Ave S, South to 20th St S, East to 22nd Ave S, North to 8th St S, west to 17th Ave S, South to the finish line through the South St. Thomas More parking lot entrance.
The Mile walk route will start in the East St Thomas More parking lot entrance on 8th St, walkers will start after all runners. Walkers will head west onto 8th St S turn south to 17th Ave S take the trail by Mickelson Middle School to 12th St S and head west until 17th Ave S, north until the reach the finish line through the South St. Thomas More parking lot entrance.
The reason I am putting on this 5k is to bring awareness to ALD, this is the story of Jacob. It all started Memorial Day Weekend in 2011, up until that point Jacob was a normal child. That weekend my parents brought him to the doctor because Jacob kept acting like he couldn’t hear us sometimes and said his ears hurt. The doctors thought it might be an ear infection, they gave him antibiotics and sent him on his way. A couple weeks later he was still having trouble, at this point the doctor’s wanted to do an MRI, the results showed multiple lesions in his brain. They sent us to the University of Minnesota right away. There, we were met with some of the best doctors we could have asked for. They let us know after some more testing that Jacob had Adrenoleukodystrophy. The disease had progressed to a point where we needed to try something right away. They started chemotherapy to get rid of his unhealthy cells so that he could maybe try and get a bone marrow transplant, but he didn’t respond well to that treatment so they said the bone marrow transplant probably wouldn’t be a good option. They started him on some steroids to help slow down the progression of the disease but we found out just a little too late and couldn’t really do much to help him. He celebrated his 8th birthday on June 23rd. For his birthday we had a huge party and invited everyone. That is the last time I truly remember Jacob being Jacob, the happy, goofy, kindhearted kid who could win anyone over with his hazel eyes and big smile. Over the next few months, Jacob slowly got worse and worse. In August, we had his make a wish trip. Jacob could still walk at this point but he was starting to get unsteady. His hearing was almost gone; he could only hear a few words out of every sentence. After the make a wish trip, things got really bad. Jacob had trouble feeding himself, he couldn’t walk anymore and he wasn't talking. We knew we wouldn’t have too much longer. The last time I saw him was the week before Halloween. He was in his wheelchair at all times, couldn’t walk, talk or move. We did a lot of snuggling in the chair, he always just seemed restless. He passed away on November 2nd, 2011 at the age of 8. My hope is to find a cure for this disease but I would love to see ALD on genetic tests they run on children when born. Early diagnosis is HUGE when it comes to this disease. ALD is caused by an underlying genetic mutation in the ABCD1 gene. This gene affects the body’s ability to create the protein that helps the process of breaking down very long chain fatty acids. A buildup of fatty acids can cause adrenal problems that eventually lead to brain damage.
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