New York, Oct. 31, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) proudly highlights National Family Caregivers Awareness Month this November. MDA's month-long campaign emphasizes the essential role caregivers play in supporting loved ones with neuromuscular diseases and shares the MDA’s Caregiver Support Guide, offering practical and emotional resources. The MDA Resource Center and supporting teams are also highlighted for their vital role in supporting family caregivers. The organization will feature family stories including Ginny and Cliff Eby, parents of Brooke who lives with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease); Alexis Lopez, mother of Tatum and wife of Justin Lopez, who lives with limb-girdle muscular dystrophy type 2B; and Monica Ramos, mother of Danny, who lives with Bethlem myopathy.
For parents like Ginny and Cliff Eby, whose adult daughter Brooke lives with ALS, caregiving is a journey they navigate one day at a time. “She’s upbeat and willing to tackle everything as it comes, so we’re there to support her,” said the Eby’s. “From finding an accessible wheelchair van to learning how to use adaptive equipment, we’re taking our cues from Brooke. Through her humor and attitude, she’s guiding us. Brooke has been unstoppable raising awareness and funds for ALS research while introducing our entire family to a community of support with the Muscular Dystrophy Association.”
Challenges Rare Disease Caregivers Face
Caring for people living with progressive diseases can be isolating, physically demanding, and emotionally taxing. Caregivers often face financial stress while managing medical care and advocating for treatment access. In rare disease communities, caregivers also play a critical role in advancing research and policy efforts that benefit their loved ones.
Monica Ramos, mother of Danny, recalls the emotional relief MDA provided. “When Danny was diagnosed, I called the Muscular Dystrophy Association, and they were there for us. Talking with someone who listened and offered advice was such a relief. Connecting with other parents through MDA allowed my son and daughter to meet others facing similar challenges, creating a sense of belonging.”
Essential Role of Rare Disease Caregivers
Caregivers of people living with rare neuromuscular diseases provide specialized care that includes managing complex medical regimens, ensuring mobility, and offering emotional support. Their dedication is key to the well-being of the people they care for, yet it can be overwhelming without external support.
Spouses like Alexis Lopez also face unique caregiving challenges. "As a caregiver to both my husband and our child, it's overwhelming at times, but it also makes me appreciate the small moments," she said. "Muscular Dystrophy Association’s resources and support team has supported us through this journey, and I couldn’t do it alone."
MDA’s Mission and Caregiver Support
Families are at the heart of MDA’s mission and the organization is deeply committed to supporting this community. Through advocacy, care, and resources, MDA strengthens the support network caregivers rely on. The MDA Summer Camp provides respite for caregivers, family getaways provide opportunities for caregivers to connect, and other education programs center around support. Additional resources include the MDA Caring for the Caregiver webinar.
“When someone is diagnosed with ALS, muscular dystrophy, or a related neuromuscular disease, they may feel alone, but Muscular Dystrophy Association ensures no one faces a diagnosis without support. Our Resource Center team is available to provide information and assistance," Nora Capocci, EVP of Healthcare Services, Muscular Dystrophy Association.
Social Media
Follow MDA on social media for family stories and resources throughout November on Instagram, Facebook, X, TikTok, and LinkedIn.
Press inquiries contact press@mdausa.org.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 related neuromuscular conditions. For nearly 75 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org.
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