Jason

It’s been a long time since I’ve posted on here and this is going to be a very long post. But I hope you can take a moment to stop and read 💜. The college football community has done so much for me and my family and I will never be able to thank you all enough for everything you’ve done for us. But here I am asking you for help again. Especially all of my MSU and Michigan friends on here. (You’ll read why in a moment.) But this time, it is not for Clark or our family. I want you all to meet Elle. Elle is the most beautiful little girl who has Sanfilippo type C. (Clark has type A). Elle is from Traverse City, Michigan and she received her Sanfilippo diagnosis last year. I had the pleasure of meeting Elle’s dad when we traveled to Washington D.C. back in March to speak with our state representatives about Sanfilippo syndrome, rare disease, and recent FDA denials of life saving medications for our kids. Elle’s parents are Michigan State alum and this summer, Elle’s family came down to East Lansing for MSU athletics and we got to spend the day with their family and meet Elle’s mom and sisters. It was such a special day for all of us as the Sanfilippo life can feel incredibly isolating. In our world of rare diseases, funding for clinical trials is slim and we rely heavily on fundraising efforts to give our kids a chance at life. This is an even greater challenge for Sanfilippo type C families like Elle’s. While sanfilippo syndrome as a whole is incredibly rare, type C is exponentially more rare than type A and type C. What this means is that what funding is available for Sanfilippo syndrome, it almost entirely goes towards research for types A and B. When we received Clark’s diagnosis, we at least had the opportunity to scour the ClinicalTrial.gov website to find active clinical trials and as you all know Clark was blessed to be selected for one. For Elle’s family, a search on the same website would result in ZERO results. No ongoing trials for type C. Until now. Elle’s parents have been truly incredible advocates for her, seeking out scientists and researchers in hopes of finding someone willing to take a chance to save their daughter. Even traveling to other countries. And they did it. They found the people they were looking for. Scientists who have developed a gene therapy for children like Elle with Sanfilippo type C. Gene therapy has the ability to save Elle’s life if she can get access to it. A one time treatment that gives her body the instructions it needs to start making the enzyme that it is missing, effectively stopping the disease in its tracks. The barrier is money. Elle’s family is going to need a lot of it to make this a reality. To the tunes of millions of dollars. It’s a lofty goal but a parent will do anything to save their child. The good thing? All of that money won’t be needed at once in one lump sum. It will come in stages. And their first milestone is to raise $100k of which they have already raised $60k. So, if you’ve read this far, thank you from the bottom of my heart. Below is the link to Elle’s GoFundMe. Please donate if you are able and share this post in you cannot. Anything and everything helps. We can save Elle’s life and allow her and Clark and every child like them to thrive and go on wonderful adventures together like we did this summer. Thank you all so much 💜 gofundme.com/f/time-is-preci…