Preston fundraiser spotlights rare condition affecting newborns’ mobility and functions

From isacra.org

PRESTON — A spaghetti dinner will be held on Saturday, April 3rd at the Robinson Building, located at 186 W 2nd North in Preston, that is a benefit for a non-profit organization that provides support and information to persons with children suffering from a syndrome that affects spinal growth early on in a pregnancy.

Robert Bosworth, one of the organizers of the event, was a guest this past week on KVNU’s For the People program.

“My daughter actually has one of the conditions that they help out with. The (organization) is actually called ISACRA, International Sacral Agenesis Caudal Regression Association. My daughter has the caudal regression, sacral agenesis and caudal regression are actually the exact same thing, it’s just two different medical terms. To go ahead and cover it all, the founder of ISACRA, Jessica Rogers, went ahead and just put the two together and it’s been a blessing,” said Bosworth.

ISACRA promotes awareness and collaborates in research and advocacy to enhance the quality of life of persons with this condition and to advance medical knowledge.

“Ten years ago when I found out my daughter actually had this, I was able to go ahead and do research on it and didn’t find very much information out there about it at all. I did find a support group, which is the ISACRA group, and it started out on Facebook. I was the 300th member that joined on that and ever since then it‘s been growing, growing, growing. Now there’s over 4,000 members.”

The spaghetti dinner, which will be held from 6 p.m. to 9 p.m., will benefit the non-profit which is the only organization that serves individuals with this condition.

They are also accepting any donations, including gift certificates, cash and food donations for the event. If you can help out, call Bosworth at (435) 770-0045. To find out more about ISACRA, go to www.isacra.org.

AUDIO: Organizer Robert Bosworth talks to Jason Williams on 3/10/2021

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