Columnist’s Note: Dear reader, this will be my final column at Muscular Dystrophy News. The past 15 months have been wonderful, but I have decided to take time away from writing to work on a variety of things, including the LGMD2L Foundation. Next year will bring us many opportunities to work with other organizations as we look for treatments and cures. I hope you all stay healthy and strong.
The issue of advocacy has been one of the prime topics in my columns over the past year. I am confident that the scientific world is doing a great job in our search for treatments and cures. Many studies are looking at interventions to help people with limb girdle muscular dystrophy (LGMD). Clinical trials are important, and we are learning new things every day.
But to my way of thinking, this is only half the battle. Scientific success will come. But then what? How do we take learning and successes and ensure that they reach everyone who needs them? And until we get there, how can we make sure that society creates the level of accessibility that we all need to be participants?
These are questions we hope to answer with our work in the advocacy arena. I have written about LGMD Awareness Day, held on Sept. 30 each year, a day to build awareness about LGMD diseases. There are more than 30 types of LGMD, and many organizations are working to help us get to the next level.
Because of the need to build awareness, some of these groups have planned our first lobby day event to educate our elected officials about the LGMD community’s needs. We want to make sure lawmakers understand this genetic illness and the top priorities of patients who live with it.
With this is mind, we have designated Sept. 22 as our first LGMD Day on the Hill. Our initial thought was to have a live event in Washington, D.C., but we are always flexible. Given our current context, the need to maintain safety is paramount. Therefore, it will be an entirely virtual event, and we’ll coordinate as many calls and emails to our elected officials as we can.
We want to deliver some short and powerful educational messages. We want patients to be the lead. LGMD patients best understand what they are going through, along with the community’s unique needs. This sense of community allows us to seek improvements in how we live.
What we have planned for Sept. 22 will prepare every volunteer who wants to join us. We will begin the day at noon, Eastern time. We already have patients ready to mobilize from the Atlantic to the Pacific.
The event will last an hour and be followed by individual work by each volunteer. We will spend time together going over our messages, as we want to make sure everyone is ready to make calls and send emails.
We will start with a one-page speech about what LGMD is. We want every legislative office we talk with to understand what we mean by LGMD, and that there are more than 30 types. These genetic diseases have many similar characteristics, but they also can present differently.
After the LGMD introduction, we will talk to legislative offices about a few topics that are critical to our group. Access to healthcare is one area of great importance to people with LGMD. Not only is coverage important, but we also know the current system isn’t set up to cover expensive, one-time gene therapy treatment. It’s important that we get this topic in front of legislators this year. We need them to understand that solutions to accessing treatment will be needed.
We also want to discuss access to personal care. Many people with LGMD need help with daily living activities. Medicaid is the only way to fund personal care if you can’t afford to pay out of pocket. But Medicaid rules often prevent people on disability from leading full lives and advancing their careers. We need better solutions.
I hope many of you will join us on this special day. Please reach out to me at any time.
I will continue many battles in coming months. I see success ahead, but we must keep fighting for scientific victories that lead to improved quality of life for all.
Thank you, and see you soon!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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