I am beyond grateful to share that Brew and ‘Cue was a HUGE success. We had 140 guests attend, which helped us raise so much awareness for mitochondrial diseases. Not only did we enjoy such amazing fellowship with new and old friends, we also raised a lot of money for our research fund! In the final count, we raised a little over $12,000 for the Graham Collins Research Fund, which is incredible! God is so good! Words truly cannot express how grateful we are for everyone who continues to help us honor Graham. But I will do my best and sincerely thank each and everyone. You mean so much to us.
Since the event, I have been working with the United Mitochondrial Disease Foundation (UMDF) to find a program that we can support. I even managed to get in touch with a doctor leading one of the research programs to hear from her about their goals, plan, and what she needs most. She is leading a study to help make the diagnosis of mitochondrial disorders easier. Because mitochondrial diseases affect multiple organ systems and produce many different symptoms, they are so difficult to diagnose. This adds to the challenge of diagnosing, as well as treating mitochondrial disorders, and also slows down the clinical research needed to discover new therapies. While genetic testing is increasingly used for diagnosis, it is very expensive, which we know all too well. So this research team hopes to use cells from a simple blood draw in conditions that stress mitochondria to test how well mitochondria are functioning. If successful, she hopes to provide a simple and relatively quick test to guide the diagnosis and medical decision process, AND it would be less expensive than genetic testing. Wouldn’t that be incredible?
This summer the UMDF will announce a few more research programs they are supporting at their annual conference in June. Brandon and I hope to attend the conference which would allow us to meet with other families, doctors, and the UMDF team and learn more about the different research opportunities. Since there are many possibilities to help with the research of mitochondrial disorders, we are going turn this over to God. In times like these, it’s best to pray about what weighs on our hearts and trust God to lead us. We know He will lead us to the best study that will have the greatest impact on so many other families. We will keep you posted on how things turn out. In the meantime, we’ll keep sharing Graham’s story with others, snuggling with our miracle baby Carter, and living a life that will make our Graham proud.