#atrx

Written by: Maria Winter, UIU Collegian Staff

Everyone deserves to feel included, loved, and respected. Best Buddies is an international nonprofit organization that is “dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, inclusive living, and family support for individuals with intellectual and developmental disabilities.”  

Here at Upper Iowa University (UIU), the student-led chapter of Best Buddies strives to help the people in and around the Fayette community feel this acceptance. Every month, the club holds one or two events to connect students with people in the community who have intellectual or developmental disabilities.  Best Buddies at UIU partners with Full Circle, which is an organization in West Union that focuses on helping people with these disabilities live independently. Best Buddies often volunteer at events held by Full Circle, such as scavenger hunts and carnivals! 

Kailey Porter is a sophomore at UIU, and an active member of Best Buddies. The mission of the club has a special place in her heart, as her younger brother Grant was diagnosed with ATRX (Alpha thalassemia mental retardation X-linked syndrome) at a very early age. This is an extremely rare genetic disorder that affects multiple organ systems of the human body, and there are only a few hundred known cases in the medical world at this time. Because of ATRX, Grant is unable to walk or talk, and he also has underlying health conditions because of the effects of the condition.  

Kailey has been an integral part of Grant’s life from day one and has gone along to his doctor’s appointments starting in first grade. Like any big sister does, she also acted as a babysitter for Grant when her parents were away. However, unlike typical older siblings’ duty, Kailey was knowledgeable on level caretaking skills, such as learning how to give Grant his medications (which she learned to do at age 9), how to properly transport him, safely clean and feed him, etc. Throughout it all, Kailey has unconditionally and fiercely loved her brother, just as any sister would. 

I asked Kailey what message she would want the world to know about Grant – and she replied with “He is like any other kid. He understands everything and what people say to him, he’s just not able to verbalize his thoughts.”

So often, we avoid situations or interactions that we may be unknowledgeable about or uncomfortable around, just because they are new. But our lack of comfort is an absolutely unjustifiable excuse to treat people who are a little different than ourselves in a way that excludes them. Kailey said that “even though Grant cannot verbally communicate his thoughts, he should still be treated just as any other little kid and given the amount of respect and care that other children receive.”  

Best Buddies provides the opportunity for students to make that connection with people in our community who have disabilities and work to bridge the gap to inclusion. For Kailey, Best Buddies is a place where she can use her life experience and help her “buddies” on another level – she is able to know when things are actually wrong, when something is needed, or just simply have a normal conversation.

For others in the club, it is a place where they are growing their circle of inclusion for the first time and seeing how truly amazing a connected community can be.  

Martha Pace is the president of UIU’s Best Buddies chapter and has been for the past several years. According to her, the mission of the chapter is to “spread inclusion and form lasting friendships with members of the IDD (intellectually and developmentally disabled) community.” That’s what it’s all about, isn’t it?

A new weapon in the fight against children’s brain tumors

Children with brain cancer may soon get some help from mice with the same disease, thanks to new research from University of Michigan Medical School scientists and their colleagues.

In a new paper in Science Translational Medicine, the U-M team describes how they developed a novel brain tumor model in mice.

The mice have the same geneticproblems as those seen in many children with the most…

I have not done anything artistic in the past few months, I had to put all my creative energy into writing a Thesis in Biochemistry.