Subject: Please Support Children Living with Rare Muscle Diseases

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Dear Senator/Representative, (Best to personalize with his/her name)

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I am writing today to ask for your support for increased federal funding for rare disease and muscular dystrophy research, including Early-Onset Facioscapulohumeral Muscular Dystrophy (FSHD).

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I recently learned about a local child named Lucas who is living with early-onset FSHD, a rare and progressive muscle-wasting disease. Unlike many adults with FSHD, children with early-onset FSHD often experience a more severe form of the disease that can rapidly take away strength, mobility, and independence during childhood.

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While promising research is underway, most treatments must first go through adult clinical trials before they can be studied in children. For families facing fast-progressing pediatric diseases, years of waiting can mean irreversible loss of function and opportunities that can never be regained.

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I respectfully ask that you:

• Support increased funding for rare disease and muscular dystrophy research.

• Support legislation that helps accelerate the safe inclusion of pediatric patients in clinical research.

• Encourage policies that help children gain access to promising therapies as quickly as possible while maintaining appropriate safety standards.

• Advocate for families affected by rare and life-altering diseases.

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Children with early-onset FSHD do not have time to wait. Their disease continues to progress every day. Please help ensure that research, funding, and policy decisions reflect the urgency these families face.

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Thank you for your service and for supporting children and families impacted by rare diseases.

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Sincerely,

[Your Name]
[City, State]