This is no ordinary race. This one’s for Isla.

The SPSRF created the #Move4Rare concept because so many physically-gifted people who have loved ones with SPS want to leverage the attention given to their spectacular feats to raise funds for SPS Research, Awareness, and Education (RArE).

They want to move for those who can’t.

#Ultra4Isla is a natural off-shoot of this movement. Mary and Randy Latza are dedicating every ultra-triathlon and Ironman competition to their grand-niece Isla, possibly the youngest patient in the world with SPS. Their goal is to raise $40,000 in 2022.

I am Randy Latza, Isla’s Gruncle (great uncle). I have been a runner for over 40 years and a triathlete for over 20. Over the years I have raced, usually in some crazy costume, but always for causes including MS and a variety of different cancers. Again this year my cause is a personal one as my wife Mary and I will be racing to help raise funds and awareness to find better treatments and a cure for SPS from which Isla suffers.

I have always been blessed with a body that can do some incredibly amazing (and incredibly stupid!) things. I’ve never understood why it works as well as it does, but have always been happy to test its limits. Occasionally my body will rebel against me and force me to think twice about what I’m doing. I can almost always “fight through” whatever the issue is and continue on my adventure.

I cannot imagine what it must be like if that “adventure” is merely trying to tie my shoes, walk to the next room, or simply exist, and my body said no, you’re going to be in pain and I’m going to shut down all movement. Right now. That is what people like Isla live in fear of every day.

Mary and I have a goal to raise $40,000 this year to benefit The Stiff Person Syndrome Research Foundation to help find a cure, raise awareness, and promote education so that Isla’s future includes the ability to enjoy any activity and lifestyle she chooses.

Mary Latza competes in the Ultra Man Hawaii to raise money for research into SPS

Mary completed Part 1 of the adventure by competing in Ultraman Florida in February. Randy competed in the Ironman World Championships on May 7th.Throughout the year we will be competing in several other Ironman events, marathons, and ultra marathons as we work towards our fundraising goal, and push our bodies beyond their limits, culminating with the Ultraman World Championships in late November.

We have chosen to use our journey in preparing for these races to raise funds to benefit The Stiff Person Syndrome Research Foundation. The only way to move forward in this rare disease is through research enabled by individual donations.

Cheer Randy and Mary on by donating an amount that’s meaningful to you!

ULTRAMAN WORLD CHAMPIONSHIP

November 2022 Kealakekua, HI

6.2 swim + 171.4 bike + 52.4 run

Randy

MARINE CORPS MARATHON

October 2022 Washington, DC

26.2 run

Randy

WINE GLASS MARATHON

October 2022 Corning, NY

26.2 run

Mary & Randy

IRONMAN MARYLAND

September 2022 Cambridge, MD

2.4 swim + 112 bike + 26.2 run

Randy

IRONMAN LAKE PLACID

July 2022 Lake Placid, NY

2.4 swim + 112 bike + 26.2 run

Mary & Randy

IRONMAN TULSA

May 2022 Tulsa, OK

4 swim + 112 bike + 26.2 run

Randy

IRONMAN WORLD CHAMPIONSHIPS

May 2022 St.George, UT

2.4 swim, 112 bike, 26.2 run

Randy

ULTRAMAN FLORIDA

February 2022

6.2 swim, 263 bike, 52.4 run

Mary