As you may remember, over a year ago I wrote an article that was featured in the newsletter for the organization, “Cure SMA.” This non-profit is devoted entirely to creating a world that is free of spinal muscular atrophy (SMA). They do this through funding research to find a cure for this disease, as well as by providing support and education for families that are effected by it. Every year, they hold a multi-day, national conference where individuals with SMA, their families, and researchers studying the disease can come together to discuss all of the latest medical breakthroughs, technology, and other news pertaining to the disease. In addition to getting to hear all of the latest information on SMA, this conference also provides a venue for individuals who have the disease to come together and share their stories about overcoming the obstacles that SMA presents. By providing both the latest medical breakthroughs and a platform to share ideas about living with the disease, this conference is without a doubt one of the best ways for individuals with SMA to gather information to combat the disease and live happy lives. The conference is held in a different city every year, and this year it is being held right here in Kansas City from June 18th to June 21st. This means that for the very first time, I am excited to announce that I will be in attendance. Not only will I be able to go, but I have been asked to participate as a member of a panel that will be discussing how to build and enjoy a successful, fulfilling life with SMA.
I am extremely excited to be going this year, which is a little surprising because I had not planned on attending until a few weeks ago. It was not that I did not want to go prior to that, but I just did not think that logistically it would work out. In order to attend the conference, you have to register and pay a registration fee. This fee is well worth it if you are able to make it to even 75% of the events, but with my body and life obligations, I knew that I would only be able to attend half of the conference, at most (my body could not handle four, 10-hour days in a row). I could not see paying the full registration fee to only get half of the information and enjoyment out of it. There are scholarships to help lessen the financial strain of attending the conference, but I felt guilty trying to get a scholarship that someone else (who could make it to all of the events and get a lot out of it) could use. Due to all of this, I had basically decided not to attend the conference, but after reading all of the comments on Facebook and Twitter from other people with SMA about how excited they were for the conference, I changed my mind. I decided that this was a “once in a lifetime” opportunity for me to meet hundreds of other people with SMA, hear about the latest drug trials, and learn more about my disability, so I needed to take advantage of it.
To try to register to attend so close to the date of the conference, as well as work out some of the logistical challenges discussed above, I decided to contact “Cure SMA.” After I explained my situation and discussed things with them, I was delighted to find that they were more than happy to work with me so that I could attend the portion of the conference that my body allows at a reduced rate. This was more than enough to make me happy, but I got even more exciting news from them a couple days later. I was given the honor of being invited to participate in a panel discussion the last day of the conference, which I gratefully accepted. To close out the conference on an uplifting and positive note, they are having a panel discussion called, “It’s A Wonderful Life,” as the final event. This panel will be composed of several individuals with SMA who have created successful, happy lives despite their disability, and the audience will be able to ask questions about how we achieved our goals and found success. It will be an opportunity for parents with disabled children and younger individuals with SMA to see that you can be happy and successful with this disease, as well as get answers to questions they have about living with SMA from people who have experienced the same problems first-hand. I cannot wait to participate, share my story, and here how others have built fulfilling lives with my diagnosis.
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