The Down Syndrome Association of SW Louisiana will be celebrating 20 years of incredible growth in the support of people with Down syndrome across the nation and at home with its 20th annual Step Up 4 Down Syndrome Walk at the Lake Charles Civic Center Amphitheater on Sept. 24.

The past two decades have seen monumental changes and improvements in the lives of people with Down syndrome.

In the U.S., the life expectancy for an individual with Down syndrome has more than doubled, from an average of 25 to now 60 years today.

People with Down syndrome are now eligible for organ transplants and in 2001, the American Academy of Pediatrics released the first health guidelines for adults with Down syndrome.

As they enjoy happier and healthier lives, people with Down syndrome are now able to explore their full potential in a more inclusive society; they are going to college. Local universities including McNeese State University now offer programs specifically aimed at furthering the education and teaching valuable life skills to people with Down syndrome to help them enjoy an inclusive life that previous generations could never have imagined.

These positive changes are all a product of inclusion and awareness, which has been the core mission of the DSASWLA since its inception in the 1990s.

Over the past two decades, the organization has strived to raise community awareness and understanding of the special abilities of children and adults with Down syndrome and to provide support to families of those individuals from birth through adulthood.

“This is an amazing time for people with Down syndrome. They have so many opportunities available to them that simply weren’t even imagined 20 years ago, and the same can be said for our organization,” DSASWLA board president, Melanie Sarro said.

Since the first walk was held on McNeese grounds in 1992, the event has surged. It has outgrown three different venues and has seen crowds grow from 200 to more than 1,000 participants.

“That first walk was a very intimate event just hoping to raise awareness and we paid for it out of pocket at the cost of around $8,000. Now, nearly everything involved with the walk is donated or paid for by sponsors and that allows us to make the event bigger and better each year. The support that we have received from the community is absolutely amazing and it has helped families and individuals with Down syndrome feel like they matter and that they are a part of a community that genuinely cares about them. There’s not much more that we could ask for then that,” Sarro said.

The organization itself has also grown.

The nonprofit organization rebranded itself in 2018 from its previous name, Up4Downs, and was able to open a brick-and-mortar office to provide a central location for families to access assistance.

The organization provides information and resources to families of people with Down syndrome at any time of need, and has expanded the programs it offers to include events such as I Can Bike and I Can Swim that provides special training to people with Down syndrome and other developmental disabilities. The organization assists families financially in the event of a death and recently assisted individuals with Down syndrome who were displaced by Hurricane Laura and living in a shelter.

Recently, the organization held a Keratoconus Eye screening for individuals with Down syndrome through the help of the Eye Clinic and, to promote a healthier lifestyle, it created the new Run Your Socks Off 5K, which included 11 participants with Down syndrome who successfully completed the event.

“All these great things are because we have been able to raise awareness and include people with Down syndrome in society. They are now not just allowed to participate in events, but they are invited to them. That’s huge. And as a result, they are building meaningful relationships within the community and they are living their lives to the fullest,” Sarro said.

The Step Up 4 Down Syndrome walk serves as the primary fundraiser for the organization to continue advocating for and assisting families. So far, more than 670 walkers and 26 teams have already registered for this year’s event.

The walk will begin at 9 a.m. at the Civic Center and immediately after, participants are invited to remain at the amphitheater and enjoy a family-friendly day of fun that will last until 1 p.m.

“It’s become so much more than just a walk to raise awareness. It’s a celebration, and we hope everyone can come out to enjoy the day with us,” Sarro said.

Online registration will remain open until Sept. 17 for the price of $15 per person to include an event shirt, or $18 for oversized shirts.

Registrations without a shirt are available for $10 per person.

Registrations can be made at the organization’s website, www.DSASWLA.org.