Here are my 10 takeaways from the intense conference days:
- Knowledge. There is a wide range of presentation topics during the family meetings. There are three tracks running simultaneously tailored to children, teens, and adults living with Mitochondrial Disease. I always leave with a laundry list of things to follow up on, everything from possible new seizure medications and other possible treatments.
- Research. UMDF's mission is to facilitate and support mitochondrial research. The only treatment option mentioned in 2007 when I attended my first conference was Coenzyme Q10. Today, there is not enough time in the opening session to cover the details of the ongoing clinical trials and studies for Mitochondrial disease. It will take time, not all options will work for all patients, but there is forward movement. There are actual drugs in clinical trials, and if everything goes as planned, epi-743 will be FDA approved in 2015. The research is giving us all hope.
- Connections. It is always the people who make the conference a success. In the middle of this life-threatening progressive disorder, there is laughter, fun and hope. This disease connects us. One thing that makes this conference unique is the way doctors and families interact. We ended up having two Mito specialists at our table Friday night. After dinner, we spent the rest of the evening talking Mito with our own local Mito researcher and the doctor who saw several of our kids back in Cleveland when they were only little babies. Very smart minds all in one room.
- The Mito doc is in. One of the best parts of the conference is that you can meet with Mitochondrial Specialists from all over the country and discuss your own child or your own diagnosis. Since many patients can't easily travel to specialists around the country this is a great way to get second opinions. I left with a lot of good stuff to further research when it comes to GI issues, seizure medications and labs to run.
- Teens. There is a whole track of presentations for teens living with Mitochondrial Disease. The teens had a blast together. They were raising around the hotel on their scooters. They were all dressed up for the Friday banquet. After dinner, they all headed up for their own prom in their beautiful dresses and big smiles. It is hard to be a teenager. I can only imagine being a teenager living with Mito.
- Our booth. For the first time, Miracles for Mito had its' own booth. We got to tell people what we are all about. We showed them our videos. We gave out our information. More than anything, we got to listen to people tell their stories. It was one of the best parts of being there.
- Our t-shirts. Our first Miracles for Mito t-shirts were a hit! People from all over the country want to wear one! We are hoping to very soon have them up for sale on our website.
- Pittsburgh. Pittsburgh is a beautiful city! To sit next to the water watching the sky line on a Thursday night with a lovely group of ladies is definitely something to remember. The city reminded me of the Southern part "Sodern" of Stockholm with its' hills and water. It was good to be back on sea level.
- Mito moms. We were five Mito moms attending from Colorado this year. We shared excitement and new knowledge with each other. We ran the Miracles for Mito booth together. We ate, drank, slept and shared our thoughts on the new things we learned. We enjoyed the Sheraton lounge together. It was good to have the support of old friends as new information and ideas were thrown our way.
- Confirmation. The conference was also a confirmation of the work we do for Miracles for Mito. We have come along way in less than four years time. The community we have built up in Colorado. The grants we are able to support families with. The ability to keep the Mitochondrial Research Lab open are only a few things on our list of accomplishments. We are doing good work, and these last couple of days have given us new fuel to continue on this path!
Love,
Maria.
No comments:
Post a Comment