Rare disease tour comes to Sioux Falls


SIOUX FALLS, S.D. (KELO) — Two national rare disease advocacy organizations are bringing their road tour to Sanford Health this weekend.

Global Genes and the EveryLife Foundation are working to provide insight for rare disease patients, caregivers and advocates.

At the age of 4, Kendra Gottsleben was diagnosed with Mucopolysaccharidosis, or MPS, a rare disease that affects her connective tissue, heart, eyes and other vital organs.

“The difference between me and someone else who doesn’t have it is, I’m missing the enzyme that is needed to cleanse my cells. So my cells are building up with like we say a gluey like substance,” Gottsleben said.

Since 2002 Gottsleben has been receiving infusions every week that provide her body with the missing enzyme, but there is no cure for the disease.
Sanford Health clinical research director Ben Forred says there are about 7,000 rare diseases affecting people, of which only a few hundred have any treatment according to the National Institutes of Health.

“In this day and age we’re used to being able to Google something and know exactly what’s going on right away, and with rare diseases that’s often not the case. You Google it and you don’t find anything,” Forred said.

Global Genes and the EveryLife Foundation are bringing their RARE on the Road tour to Sanford Health in an effort to bring people living with rare diseases together.

Events like this bring more awareness which brings more research for potential treatments.

“Being able to connect with others who are living with same condition as you are, or being able to contribute some data to research so that someday down the road there is something to Google, that’s massively important,” Forred said.

Gottsleben has published two books explaining that acceptance is key for living with a rare disease. By sharing her story she hopes to show others that you can have a bright future and accomplish the things you want to.

“I feel like my life is to kind of help others with their journey, if possible,” Gottsleben said.

Gottsleben hopes to provide parents, caregivers and others living with a rare disease with some guidance that while there can be challenges, life can still be good.

“The rare disease world is very unique and special and I love being a part of it,” Gottsleben said.

The RARE on the Road tour will take place tomorrow morning from 8:30 to 4 P-M at the Sanford Center

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