Manasota BUDS is holding its 21st annual Buddy Walk on Oct. 28, but there will be at least one first at the event.
“This is going to be the first year Jacob gets to physically walk," Andrew Riffee said about his 7-year-old son. "The other Buddy Walks we’ve done, our family and our team have walked with him, but he’s been in a stroller. This is going to be a special one for us because we’re going to let him loose.”
Jacob Riffee has a dual diagnosis of Down syndrome and autism. He’s nonverbal and has some additional challenges that prevent him from participating in most of BUDS' programs. But on previous Buddy Walk Days, his dad said he’s nothing but smiles.
BUDS stands for Bringing Up Down Syndrome. Riffee called the group a familial resource and said it was one of the reasons he and his wife, Cara, decided to put down roots in Lakewood Ranch with their two children. Jacob has a 10-year-old brother, Connor.
“Manasota BUDS was the only game in town. There’s another (program) in the Tampa area, but it’s not as robust and tenured as Manasota BUDS,” Riffee said. “Jacob moved here when he was 1. Therefore, our learning curve, not only moving to a new area but for his journey, was a steep one. Surrounding ourselves with those who have crossed those trails was an invaluable resource for our family.”
The group is governed and led by parents. After moving from Birmingham, Alabama, the Riffees received referrals for pediatricians, dentists and schools. They learned how to navigate Independent Education Plans and what trusts to set up for Jacob’s care later in life.
Riffee now serves on the board of directors and he joined a little over a year ago.
“Nobody is compensated on that board. It’s just volunteering of time, services, skill sets and expertise, and everyone on our board presently has a child with Down syndrome,” Riffee said. I’m on a lot of different boards. Most of the time you don’t have board members who truly have skin in the game, and 100% of us have skin in the game at BUDS.”
Riffee looks forward to the day that Jacob can participate in some of the programs BUDS offers. The scholarship program pays for swim lessons, summer camp and equine therapy. The group organizes play sessions for the younger children and Teen BUDS events for the older kids.
When a group of teenagers aged out of Teen BUDS, the group started introducing adult programs. Parents are included in the fun, too, thanks to Mom and Dad Nights Out. BUDS also offers seminars and scholarships for parents to attend conferences.
The group helps parents welcome their babies with Down syndrome by providing “New Parent Kits” that contain information, resources and gifts. The Parents First Call program offers a hospital visit or telephone call with a parent who’s been there.
BUDS serves over 250 local families, and the Buddy Walk is the organization's main source of funding. While grants and donations come in throughout the year, the event accounts for about 60% of the group’s fundraising efforts. With over 500 people attending each year, it’s also the largest Down syndrome awareness event in the area. Over $50,000 was raised at last year's walk.
Riffee said the board is trying to change the financial dynamic, so the programs aren’t so reliant on the Buddy Walk. But the event would carry on anyway, if for no other reason than camaraderie.
“For a moment in time, wherever the Buddy Walk is hosted, it is truly the happiest place on the planet,” Riffee said. “It’s a celebration of our kids. It’s a celebration of being part of a community that is beautiful, loving and tight knit. It’s not without its challenges, but it really is a blessing to be a part of it.”
Lesley Dwyer is a staff writer for East County and a graduate of the University of South Florida. After earning a bachelor’s degree in professional and technical writing, she freelanced for the Sarasota Herald-Tribune. Lesley has lived in the Sarasota area for over 25 years.