Williams Family looking for ALS supporters

Story created Nov 07, 2007 - 09:16:55 CST.

by Warren Haacke Press-News Reporter




In January 2006 33 year old Matt Williams was diagnosed with ALS (Lou Gehrig's) disease. Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease that weakens and eventually destroys motor neurons (components of the nervous system that connect the brain with skeletal muscles). Skeletal muscles are involved with voluntary movements such as walking and talking.

A person with ALS usually has problems in dexterity or gait resulting from muscle weakness or with difficulty speaking or swallowing.


Approximately 30,000 people in the United States have ALS. Most patients have a life expectancy of 3-5 years after diagnosis.

Williams and his family, wife Valerie, sons Zach 5, Nolan 2 and Emma 8 have had to deal with some major changes in their lives.

Williams retired from his job at Leading Edge Ford to spend more time with his family, stay as healthy as possible and also adjust to the disease. Val is an independent contractor in the health and wellness field who works via the Internet from their home.

Matt and Val are very proactive in dealing with the disease when it comes to Matt's diet, exercise, medicines and research on the disease.

Williams goes for exams every three months and undergoes breathing and strength testing, along with other tests.

Williams and his family are always holding out hope that someday a cure may be found or something will be discovered to lessen the severity of the disease.

The family cherishes each day and does not look too far into the future.

Matt and Val have run through an expected gamut of emotions, but now are at peace. "Instead of continually asking "Why", I finally asked myself "Why not me?" said Williams. "After that, we had a sense of peace."




Setting short-term goals and looking ahead in short time frames, the family still takes part in family activities and outings and cherishes every moment they are together,

Faith, family and friends are their rocks of strength.

Matt, Val and their family have now turned a major portion of their energy to gaining support and funding for ALS research.

Val is passionate about supporting research and wants the public to know how desperately ALS research needs funding. "It now costs $85 for one minute of ALS research," Val said. "We need to keep pushing hard to raise the necessary funding."

One event the Williams' are particularly excited about is the Muscular Dystrophy Association (MDA) "Stride and Ride" event to be held at the Crossroads Center Mall in Waterloo on Saturday, February 9.

The event raises money to help MDA provide services such as expert medical care at MDA clinics, MDA summer camps for youngsters, repair and purchases of wheelchairs, leg braces, communication devices and other equipment and scientific research seeking treatments and cures.

Registration for the event begins at 8 a.m. and the walk starts at 9 a.m.

"The nice thing about the event is that the funds raised by your team can be designated for particular diseases or causes," Val said. "We designated ours last year to ALS research."

Last year, Williams' group, Team Will had the largest contingent of walkers, 55 and raised the most amount of money, $4100.

"We are looking to double or triple the number of walkers this year," Val said.




Josh Nuss, director of the MDA foundation in Cedar Falls, was very impressed by the Team Will turnout. "Team Will" had a large and enthusiastic group," said Nuss. "We raised $11,000 last year and they contributed over $4000 of that."

Nuss continued, "Last year we had a band playing and fun activities for the kids. This year we hope to add a drum line, mascots and cheerleaders from local schools and other attractions."

Val also was very high in her praise of the ALS Division of MDA located in Cedar Falls. "They do so many things for individuals and families that need help," she said. "They loan out or purchase equipment like hospital beds, wheel chairs and communication devices. They help pay for certain tests and portions of medical bills not covered by insurance. They offer support groups for families, summer camps for kids and help fund ALS research.

The Williams family is determined to surpass last year's goals in a big way. "As I said we want to double or triple our team members," said Val. "We also want to greatly up our donations."

Donations for the walk can be sent directly to the Williams family at 303 S. 10th Street, Osage, Ia 50461. Checks can be made out to "MDA of Northern Iowa." The Williams phone number is 641-732-5696 if anyone has questions. You can also contact additional event sponsors Carrie Barker at 641-732-5305 or Jo Maakestad at 641-732-1226. You may also inquire about direct or online donations by calling the MDA office at 319-268-9240 or by e mailing cedarfallsdistrict@mdausa.org.

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