Hoffmans Organize 16th Annual Chip for Charity
Jul 24, 2014 11:03PM
● By Laura Ustanovska
Photograph by Heart & Soul Photography
Hoffman Gallery [6 Images] Click Any Image To Expand
“Our second son, Sam, was the 81st case in the world diagnosed with a rare neurological disorder called succinic semialdehyde dehydrogenase deficiency (SSADH) when he was 18 months old,” explains Carolyn Hoffman, wife of Brad and mother of Jacob (21), Samuel (19) and Sarah (15).
“We were told SSADH deficiency was a rare metabolic disorder characterized by the lack of the enzyme involved in the degradation of GABA [the chief inhibitory neurotransmitter in the central nervous system], thus affecting the brain and the central nervous system,” continues Carolyn. The news regarding Sam's future was devastating as SSADH causes seizures and affects fine and gross motor skills, concentration, balance, speech, intellect and more.
Because SSADH is so rare, there was no one for the family to turn to for additional information nor were there any known treatments for the endless side effects. The family reached out to K. Michael Gibson, PhD, at Baylor University, who diagnosed Sam, in an effort to better understand how they could help him.
“Dr. Gibson encouraged us to start an association to raise awareness and fund research,” says Carolyn. “So, for the past 16 years, our mission for the SSADH Association has been to help children and families affected by SSADH by finding better treatments and ultimately a cure for the disorder.”
“In an effort to raise money for research and support the SSADH Association, we started a golf outing with the backing of Carolyn’s employer ProShip, Inc. (formerly SPSI), along with many business contacts at Arandell, and our family, friends and neighbors,” explains Brad, who is the president of Arandell Corporation. “This year we will be holding the 16th Annual Chip for Charity in honor of Sam.” The golf outing has raised almost a million dollars and is annually attended by over 350 participants plus 40 volunteers. This year's outing will be held Thursday, September 4, at Kettle Hills Golf Course in Richfield.
Sam and Sarah all put in huge amounts of time towards the
association,” relates Carolyn. “We have missed the kids' sporting
events and birthdays and worked through some holidays to address
issues regarding the association or to prepare for one of the
upcoming fund raising events. It is not easy growing up in a family
dealing with a special needs sibling, let alone with all the demands
of the association.”
“A few years ago the kids were each in different schools,” continues Carolyn. “Sarah was at Cushing Elementary School - Delafield, WI, Sam was at the middle school and Jacob was at the high school. During parent-teacher conferences, each one of their teachers told me that they 'had a great sense of humor.' The kids do have a good sense of humor; they are brave and strong and know it is important to help those less fortunate.”
Jacob, a junior at UW-La Crosse, recently wrote a story about Sam for one of his English classes. The story, which speaks about the importance of the association and how much hope the Hoffmans have been able to share with other SSADH families, was picked up by CNN.
In the past, Sarah and her friends have baked and sold cupcakes at a booth during the Delafield Art Walks, donating the proceeds to the association.
However, the Hoffmans realize the importance of getting away from it all and spending quality time together as a family. Once each year, this family leaves behind their jobs, work at the association, doctors, therapists and others and takes a family vacation. “We go for a week of pure family fun,” says Carolyn.
Years before ever hearing of SSADH, Carolyn and Brad moved to Delafield. When the couple married 22 years ago, they looked at a map and chose Delafield because it was situated exactly between the two cities they worked in – Waterloo and Milwaukee. Like other residents, the family appreciates all Delafield has to offer – from bike trails and parks to great restaurants and shops. “But, for us,” relates Carolyn, “the best part about Delafield is the overwhelming community backing, kindness and generosity we have received for our cause.”
“As a 'kitchen table' organization, our support comes from this community, our family, friends, co-workers, neighbors and business partners,” continues Carolyn. “We are so grateful for their unwavering support and donations. Whether it is their time, talent or good old fashioned money – we could not have accomplished what we have without this community.”
“When I say we have supportive neighbors, I don't mean they just come and golf,” Carolyn goes on. “For example, we have neighbors who do work for gratis, asking for nothing in return but donations to the SSADH Association’s golf outing. Our neighbors drop off empty baskets on our doorstep because they know we’ll need them for the golf outing. Our neighbors go beyond the call of duty! To us, and all those who benefit from the important work of the SSADH Association, they are heroes.”
“Our neighbors are our friends, and they aren’t just your average friends – our friends have wings and halos,” Carolyn adds. “They understand why we are late whether it is because we are sending one more email to a newly diagnosed SSADH family in Greece or we are navigating around some new medication that Sam has to take an hour before a meal or two hours after a meal or within a half an hour of eating. They understand why their house may be rearranged after we leave because Sam, and his obsessive-compulsive behavior (OCD), can’t tolerate a certain rug in the hall or a particular picture on the bathroom wall. No matter what – they are always there! It’s a comfort that is hard to put into words.”
Offering comfort also happens to be one of the Hoffmans' favorite things about the SSADH Association. “We love being able to connect with the other families and give them hope that their precious little angel will have a happy future,” says Carolyn. “And someday maybe they will be able to hear them say a couple of words or even ride a bike.”
“We have tried to cut down on our activities, but our neighbors have encouraged us to keep our annual golf outing going because it is like a 'family reunion' or a neighborhood picnic,” Carolyn explains.
Alongside neighbors, local businesses and business owners pitch in each year for the outing, too. “Gary's Auto Repair - Delafield, WI and Delafield Vision Center - Delafield, WI have donated to the outing each year,” says Brad. “Lake Country Landscaping - Delafield, WI has done sponsorships, golfed and donated. Bob Krantz from Kranz Design - North Lake, WI golfs and always donates amazing hand crafted items. This year Bob donated beautiful vases, and Avant Garden Florist - Delafield, WI donated fresh flowers to display them at the golf outing. Albrecht's Sentry Foods - Delafield, WI has donated everything from grills to wine and cheese baskets, and Smoov Music, Sound & Lighting Services - Delafield, WI provides the sound system, along with many others.” The support of these local merchants is inestimably important as large corporations generally donate to “large causes” and usually have a predetermined charity they designate each year.
“Because of the association we see such incredible generosity. It makes me sad to hear the news most days. I believe, as we have experienced, there is actually as much good happening every day as bad,” Carolyn shares. “For example, during one of the golf outings, a golfer told me that the night before he was explaining the Chip for Charity to a stranger at a local pub. When the other man was leaving, he handed the golfer an envelope and told him to put this towards the charity to help the kids. The envelope he was given had four, one-hundred dollar bills in it.”
Sam, who graduated from Kettle Moraine High School - Wales, WI just this year, works at Opportunities, Inc. In June, he began a yearlong medication trial at the National Institutes of Health. Hopefully, this medication will make each day easier for him. Brad and Carolyn are happy to be able to tell parents with newly diagnosed children that there are currently several pharmaceutical trials taking place.
The association is always looking for volunteers and donations to use in the raffle or silent auction at the golf outing.