Austin Strong Foundation partners to offer ‘My DIPG Navigator’


Austin Smith passed away six years ago on May 20. The Austin Strong Foundation is a partner in the ChadTough Defeat DIPG Foundation. (Photo submitted)
By: 
Kim Brooks
Express Editor

     Friday, May 20, was the sixth-year anniversary of the passing of 6-year-old Austin Smith. He passed away from DIPG, a rare form of childhood brain cancer.

     In mid-April, Britt and Mikinzie Smith attended a special event in Ann Arbor, Mich., at the Crisler Center at the University of Michigan. They were there as special guests at the ChadTough Defeat DIPG Foundation gala.

     At the beginning of the year, the Austin Strong Foundation became research partners with the ChadTough Foundation. In addition, the foundations, among others, have collaborated as funding partners to establish the new “My DIPG Navigator” program.

     The ChadTough Foundation gala raised $1.6 million, all going to DIPG research.

     “It makes our impact bigger,” noted Mikinzie of the Austin Strong contribution.

     “It magnifies our money,” added Britt.

     The Smiths met multiple families and parents who went through the exact same thing they did six-plus years ago.

     “There was a family from Philadelphia we instantly bonded with,” noted Britt of a couple who just lost their young daughter to DIPG.

     The Smiths were able to spend time with Jason and Tami Carr and Mark and Jenny Mosier, co-founders of ChadTough. Both families lost a son much like the Smiths.

     “Tami was the first DIPG mom to reach out to me after Austin’s diagnosis,” recalled Mikinzie of the Carr family.

     “All three boys passed away within a few months of one another,” added Britt. “The boys were all around the same age. We have a lot in common in that respect.”

     The Smiths, Carrs, and Mosiers were all a part of the DIPG Collaborative, donating money raised by each individual foundation to a larger foundation to make a bigger impact. Then, the Carr and Mosier foundations merged, and the Austin Strong Foundation chose to help fund their efforts.

     “We pool our money to fund research grants together,” explained Mikinzie. “We’re stronger and tougher together, a saying we adopted. We can make more of an impact on research which is essential since there is so little funding out there.”

     While at the ChadTough gala, the Carrs announced news about the My DIPG Navigator and introduced the crowd to the three nurses who would be working full-time for the program.

      “ChadTough had the capital to fund the startup of the project, but to make it all work, they needed partners to get it off the ground long term,” Mikinzie shared. “A network of sponsors by ChadTough and 21 other families and foundations, Austin Strong Foundation being one of those founding partners.”

     These three nurses all have an extensive background and knowledge of DIPG. They’ll offer 24/7 free consultation services to families, much like the Smiths, Carrs, and Mosiers, who are going through the various stages of a DIPG diagnosis.

     “Within 24 hours or less, families will get a response,” continued Mikinzie. “These nurses stay connected with families throughout their entire journey.”

     With access to a wide world of healthcare options, the best and brightest doctors, and researchers, the Navigator nurses do the leg work for parents when it comes to second opinions and online data.

     “They relieve so much of the burden for families. What we wouldn't have given to have that when Austin was going through it. Hours on the phone just to speak to a doctor; desperate feelings.”

     “A diagnosis like this puts you in scramble mode,” added Britt. “Social media and internet are great, but there are no real answers on how to handle this.”

     “Families will have the answers they need right away; there’s no amount of money you can put on that,” said Mikinzie. “When you're told to go home and make memories, we did not want to accept that as parents. This is the first resource they can reach for.”

     “People ask us where our money goes, and when you primarily fund research, is takes a long time to show the real results of that. This project is a physical thing where we can instantly see the good it will do for families in the same position as us," continued Mikinzie.

     This program gives time back to those families to spend with their young children in their last months, weeks, or days.

     The Austin Strong Foundation continues to donate to the University of Iowa Children’s Hospital as well. The Smiths maintain a connection at the hospital, and with the DIPG Navigator, they can now help families right here in Iowa.

     “This gives us a real advantage we wouldn’t have in a small community as a small foundation,” noted Mikinzie of this greater connection. “This will become a greater resource at the UIHC.

     “This is such a great gift to these families, we are so excited to be a part of it, and we wouldn’t be able to do this without our generous supporters,” thanked Mikinzie.

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