I am proud to say that Muscular Dystrophy News Today is running a great initiative called “30 Days of MD.” This series of stories by patients, caregivers, researchers, and others will continue for the duration of September and will end with the day now recognized as LGMD Awareness Day — Sept. 30. I hope you’ve had a chance to read some of the stories appearing on the website and on social media. They are inspiring.
These stories remind us that individuals with neuromuscular disorders are leading amazing lives. I can say that the past 13 years of my life, since my LGMD2L symptoms began, have been special. This initiative shines a light on many types of muscular dystrophy and on the creative living methods individuals use to overcome their challenges and thrive!
If you go back to the post for Day 12, you will see the story of Carol Abraham and her husband, Tim. They have done the community a great service by establishing this day of awareness, and their work helped us bring the first National LGMD Conference, held earlier this month, to fruition.
This year marks the fifth year of the LGMD Awareness Day initiative, and the activities continue to get better and stronger. Carol offers us myriad ways to get involved. Advocacy has been a part of her work from the start, and if you want to help, Carol makes it easy. For example, you can:
- visit the page on Becoming an Ambassador to get tips for promoting awareness in your community
- visit the Resource Materials section to get promotional tools that will help you build awareness
- participate in the Lime Green for LGMD campaign by purchasing wristbands, T-shirts, pins, and other items
- volunteer to be featured in an upcoming LGMD Spotlight Interview
- paint the nail of your index finger lime green! This campaign, called Point to a Cure, began during the recent LGMD conference and is intended to spark conversations when people ask why you have one nail polished lime green.
These activities have been raising awareness for years. Carol is very inclusive when calling on people to help. She reaches out to individuals with LGMD, but also to family members, healthcare professionals, and researchers. Additionally, she brings in organizations, medication developers, public health entities, and any other group with an interest in LGMD.
The above-mentioned web pages fall under the umbrella of the website LGMD-info.org. It is the best resource for the LGMD community I’ve seen. There is so much information. I don’t know how many times I’ve called Carol to ask a question and had her respond with a link to this site.
LGMD Awareness Day resources are prominent on the website and explain how to get involved, but the site also covers some basic facts about LGMD. Additionally, it lists all the organizations and foundations that support LGMD research and services, and you can share links to the spotlight interviews for each of the organizations that have completed one.
The section on resources is the most robust I have seen. There is information on LGMD Facebook support groups, blogs, and events, diagnosis-assistance tools, and available emergency funds. It also addresses genetic testing, clinical trials, international registries, and assessing the legitimacy of any proposed LGMD treatment. While researching this site in preparation for my column, I realized that I need to spend more time looking at all the links and connections.
As for the upcoming LGMD Awareness Day, let’s knock it out of the park this year. We have 11 days from the posting of this column. Let’s use Carol’s great information and take it to our social media sites. The more awareness we can build for LGMD, the greater progress will be made toward treatments and cures. And don’t forget to paint your index fingernail lime green!
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 Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.