Other Resources
The LGMD Awareness Foundation
The LGMD Awareness Foundation raises awareness about the LGMDs. Visit their knowledge base to learn more about the diseases, or get involved with advocacy and community building.
The Speak Foundation
The Speak Foundation is a patient advocacy group supporting the LGMDs. They organize the LGMD Conference, which you can attend to meet others with your disease and hear about new research. Visit their website to subscribe to LGMD News Magazine, and their Youtube channel for more videos and information:
https://www.youtube.com/@thespeakfoundationnon-prof1460
Treat-NMD
Treat-NMD is a network of experts in neuromuscular diseases. Their Family Guide is an easy-to-understand booklet for patients and caregivers coming to terms with a diagnosis.
https://www.lgmd-info.org/wp-content/uploads/2025/08/Treat-NMD-Family-Guide.pdf
For Patients
As LGMD2L progresses, patients may benefit from assistive devices such as orthotics/braces, walking frames, scooters, or wheelchairs. These can keep people mobile even into the late stages of the disease. Assistive devices can significantly improve quality of life and independence. Using mobility aids is not “giving up”: they can protect your remaining muscle function and maintain your social independence. Discuss your options with your doctor early – not only after falls begin.
Assistive technology
There are currently no medications that directly treat LGMD2L. Occasionally, doctors may prescribe medication for certain individual concerns, such as muscle pain or heart issues, that are not typically needed for most patients. The LGMD2L Foundation is monitoring medications being developed and will make announcements to the community as treatments become available.
Medication
There is no LGMD2L-specific diet. Consuming enough protein is important for muscle maintenance, but excess protein will not lead to new muscle growth. General healthy nutrition principles apply:
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Emphasize fruits, vegetables, whole grains, legumes
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Get enough lean protein (0.8-1.2 grams per pound of body weight every day)
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Consume healthy fats (olive oil, nuts, fatty fish) and avoid saturated fats
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Limit foods with added sugars or high sodium, and avoid ultra-processed foods
Managing weight is important for LGMD2L patients, as more body weight means more stress on weakened muscles. If you are overweight, even a modest reduction in weight can meaningfully reduce muscle stress. If you need help losing weight, speak to your doctor.
There are currently no supplements that have been shown to help LGMD2L. Some patients choose to take certain supplements that may be beneficial for muscle in general, or that have been researched for patients with other muscle disorders. The following are supplements that are safe for most people and that community members often ask about. Most doctors believe that these supplements are not needed in people with a balanced diet. Speak with your doctor before starting or changing a supplement program.
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Creatine increases phosphocreatine stores in muscle, supporting energy production during short bursts of activity. It may improve strength and reduce fatigue in some neuromuscular disorders, although there is no specific research in LGMD2L
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Magnesium is essential for muscle contraction and signaling. It may reduce muscle cramps and support neuromuscular function, although there is no specific evidence on LGMD2L.
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Coenzyme Q10 is used in generating energy in muscles. It may also reduce oxidative stress. There is little evidence for it helping in muscular dystrophies.
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Vitamin D is essential for muscle and bone function. Deficiency is common, and you should supplement if your lab test shows you are deficient.
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Omega-3 Fatty Acids (EPA/DHA) may help muscle membrane stability, but there is no evidence of them helping in LGMD2L. They may also be beneficial to heart health.
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L-Carnitine is involved in transporting fuel for energy within muscle cells. There is little evidence that it helps in muscular dystrophies.
Diet and supplements
The effect of exercise in muscular dystrophy patients is complex. In some muscular dystrophies, high-intensity exercise can accelerate muscle damage. In LGMD2L, current expert opinion suggests that appropriately dosed activity is beneficial and helps maintain strength, endurance, and metabolic health.
Try to maintain an active lifestyle that includes exercise appropriate to your ability. Listen to your body and do not overexert yourself. Muscle pain or cramps that extend 24 hours after exercise are a sign that you are exercising too hard. See a doctor immediately if you experience dark colored urine after exercise.
In some cases, physical therapy can help maintain flexibility and strength into the later stages of the disease. Speak with your doctor if this might help you.
General Principles
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Stay active, but within your capacity.
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Avoid “no pain, no gain” thinking.
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Prioritize consistency over intensity of exercise.
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Stop your exercise program and speak with your doctor if you experience prolonged soreness (>24 hours), significant weakness, or functional decline.
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Seek medical help immediately if you experience dark or cola-colored urine after exercise
Recommended Types of Exercise
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Low-impact aerobic activity: walking, swimming, stationary cycling
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Light resistance training: low weight, higher repetitions, controlled movements
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Stretching and mobility work: maintain joint flexibility
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Avoid eccentric overload (lengthening a muscle under load) such as heavy downhill walking, plyometrics, or heavy negatives in weightlifting.
Lifestyle
Best practices for living with 2L
Because LGMD2L is rare, there is limited research on how lifestyle factors affect disease progression. Always discuss any new exercise or diet program with your doctor. See your doctor at least annually to monitor your overall function and labs.
This strategic approach is designed to maximize the impact of every research dollar, inspire collaboration across disciplines, and create hope for individuals and families living with LGMD2L.
Provide patients and families with evidence-based guidance on treatments, supplements, and lifestyle choices, helping them make informed decisions for managing their condition.
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Raise awareness in the academic community and pharma industry, fostering interest and collaboration to accelerate research towards treatments.
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Enable pharmaceutical companies to test existing treatments and explore new therapies specifically tailored to neuromuscular conditions like LGMD2L.
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The impact of our research initiatives goes far beyond academic discoveries. By addressing critical gaps in understanding and fostering collaboration, we aim to create tangible benefits for the LGMD2L community. These efforts are designed to transform research insights into meaningful outcomes:
Our research impact
© 2025 LGMD2L Foundation. All rights reserved.