By: Carly Levy
Last October, Dave Newman’s friends noticed that he was slurring his speech and were so concerned, they informed his wife about it. At first, Dave and his wife Jennifer didn’t think much of it – until the symptoms became more apparent.
The Coral Springs couple began seeing various specialists to find out what was going on with the 48-year-old father of five. When the diagnosis was amyotrophic lateral sclerosis – also known as Lou Gehrig’s disease, his family was devastated said his wife.
Residents of the Country Club community, both Dave and Jennifer, are from the New Jersey and New York area. Dave moved to Coral Springs in 1973 with Jennifer moving four years later. A graduate of Coral Springs High School, Dave met Jennifer in 1995 through mutual friends and Jennifer said that after she took one look at his smile, she was hooked. They were married four years later.
Jennifer currently works as the Operations Vice President of a startup insurance company, Capital Management, and Dave works part-time as a foreman at his brother’s business, Newman’s Quality Construction. However, before he was diagnosed with ALS, he was a coach for the City of Coral Springs where he oversaw football, basketball, soccer, and baseball. Jennifer said Dave loved working with the children and developing their talents, and parents would often tell him what an great influence he was to their children and how generous he was to devote his time to them.
Dave and Jennifer have five children: Kris, 28, Trevor, 21, Brooke, 19, and 16-year-old twins Morgan and Zachary. As a family, they enjoy going out to dinner, movies, playing sports, or traveling to see their two children attending college in South Carolina and Orlando.
Currently, Dave is in the early stages of ALS working through his speech issues. Last week, the family had their first appointment at the University of Miami and will be working with an ALS center for the next month.
“No two people are alike with this disease, so it’s impossible to be prepared because you don’t know what each day is going to bring and how each person will develop symptoms as they go.” said Jennifer.
ALS is a rare disease that attacks and kills the nerve cells that control voluntary muscles. The nerves lose the ability to activate specific muscles, which causes the muscles to become weak and leads to paralysis. ALS is progressive, meaning it gets worse over time. The Centers for Disease Control and Prevention estimates that approximately 12,000-15,000 Americans have ALS. While there is currently no cure for ALS, Jennifer said that the family is giving him as much love, hope, and support as possible to help him get through this dark and difficult time.
Dave is currently taking a medication for ALS that has been on the market for years, however, in August there will be a new drug available called Radicava that was just approved by the U.S. Food and Drug Administration. Although Radicava is not a cure, it may be an important advance in helping people live with the disease. The drug’s list price is very prohibitive at $1,000 per infusion, $11,000 per dosage cycle, amounting to $146,000 per year if no insurance or assistance from the drug company is added.
The most important medication that helps Dave get through, is the love from the community, and more importantly, his family. He’s living in the moment and and is spending quality time with them.
Because ALS is an expensive disease, Jennifer said the family can use all of the help it can get to raise funds which will give Dave more time to be with his family. One fundraiser is on FreeFunder – a crowdfunding site, where they have already raised $32,000 towards their goal of $50,000 towards future treatments for Dave.
Members of the community have also been taking part in helping Dave raise money for future treatments such as the recent fundraiser at the 9th Annual Benvitational Golf Tournament held at the Colony West Golf Club in Tamarac. Jennifer said that every one of Dave’s friends, family, business associates, and even friends of friends have been going above and beyond trying to be supportive by trying hard to come up with different ways to raise funds.
The goal right now, along with raising funds, is to continue being the loving family that they have always been. While Jennifer knows that this is the most difficult thing they have had to face, “As a family, we’re gonna fight through it in anyway we know how, and to stay positive.”
If you’d like to donate, please go to FreeFunder. Or if you’d like to attend the next fundraiser, it will be held on June 3, at JD’s Bar and Lounge in Coral Springs.