GrantRSS2 days ago
The Muscular Dystrophy Association is holding its 26th annual fundraising gala in New York City on June 4 to raise money for ALS research. The event brings together financial leaders and medical researchers to support the search for treatments and cures for ALS, a disease that affects nerve cells controlling muscles.
WHY IT MATTERSFunding from this gala directly supports ALS research that could lead to new treatments, making it important for patients to know where research dollars are being invested and what progress is being made.
PolicyRSS2 days ago
A large survey in the U.K. found that most people—including families of babies screened for SMA, people living with SMA, doctors, and the general public—strongly support newborn screening for spinal muscular atrophy. The main reason people liked the idea was that catching SMA early could help babies have better health outcomes. Researchers looked at what factors influenced people's opinions about this type of screening.
WHY IT MATTERSIf newborn SMA screening becomes standard in the U.K., babies diagnosed early could start treatment sooner, potentially preventing severe muscle weakness and improving their long-term quality of life.
AdvocacyRSS2 days ago
A caregiver shares her experience of learning to navigate life after her husband was diagnosed with ALS in 2018. She describes how she went from knowing almost nothing about the disease to becoming an active member of the ALS community. The article focuses on the emotional journey and finding support during a difficult time.
WHY IT MATTERSFor ALS caregivers and newly diagnosed patients, this personal account provides practical insights into building a support network and coping strategies during the early, overwhelming months after diagnosis.
AdvocacyRSS4 days ago
Children with Prader-Willi Syndrome (PWS) have real character strengths and positive qualities, but the challenges of the condition can make these strengths difficult for families to notice and support. Recognizing these strengths is important for family wellbeing. However, even when caregivers understand their child's strengths, actually supporting them can be exhausting for parents and guardians who are already managing the demands of PWS.
WHY IT MATTERSFor families managing PWS, understanding that their child has genuine strengths—beyond the condition's challenges—can improve how they view their child and their own emotional wellbeing, even though caregiving remains demanding.
NewsRSS4 days ago
A patient with AATD (Alpha-1 Antitrypsin Deficiency) found personal inspiration by watching the movie Top Gun: Maverick, discovering parallels between the fighter pilot's perseverance and their own journey managing a chronic lung disease. The article explores how popular culture can provide emotional support and motivation for people living with rare diseases. This is a personal reflection piece rather than medical news.
WHY IT MATTERSFor AATD patients, finding relatable stories and sources of inspiration in everyday media can help combat the isolation and emotional burden of managing a progressive genetic lung disease.
NewsRSS4 days ago
ATTR-CM is a rare heart disease caused by abnormal protein buildup, but many patients also experience serious stomach and digestive problems that doctors don't always talk about. These gastrointestinal issues—like difficulty swallowing, nausea, and poor nutrient absorption—can be just as challenging as the heart symptoms and significantly impact quality of life. The article highlights that patients need better awareness and support for managing these hidden digestive complications alongside their heart treatment.
WHY IT MATTERSATTR-CM patients often suffer from overlooked gastrointestinal complications that can worsen malnutrition and quality of life, yet these symptoms receive less medical attention than cardiac manifestations—understanding this connection helps patients advocate for comprehensive care.
AdvocacyRSS5 days ago
This article announces a support group meeting in Bethesda, Maryland for people with rare diseases. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others facing similar health challenges. The meeting was scheduled for Saturday, July 17, 2027.
WHY IT MATTERSSupport groups provide patients with rare diseases a chance to connect with others who understand their condition and learn practical coping strategies from people with lived experience.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system attacks muscles and causes weakness, is meeting in the Pacific Northwest region covering Oregon and Washington. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others dealing with the same condition.
WHY IT MATTERSThis support group provides a local community resource for MG patients in Oregon and Washington to connect with others managing this rare autoimmune disease and access peer support.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system weakens muscles, is meeting in St. Petersburg, Florida. Support groups bring together patients and caregivers to share experiences, ask questions, and learn from each other about managing their condition.
WHY IT MATTERSIf you or a loved one has myasthenia gravis in the St. Petersburg area, this support group offers a chance to connect with others facing the same challenges and access local resources.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system attacks muscles and causes weakness, is meeting in Northeastern Pennsylvania. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others dealing with the same condition.
WHY IT MATTERSThis support group provides a local community resource for MG patients in Northeastern PA to connect with others, share coping strategies, and access peer support—which research shows improves quality of life and treatment adherence.
AdvocacyRSS5 days ago
This is an announcement for a support group meeting for people with myasthenia gravis (MG) in the Sacramento-Sierra region of California. The group meets on Saturday mornings and provides a space for patients and caregivers to connect with others who have the same condition. Support groups help people share experiences, get information, and feel less alone.
WHY IT MATTERSThis local support group offers Sacramento-area MG patients a chance to connect with others managing the same autoimmune condition and access peer support that can improve quality of life and disease management.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG) — a rare condition where the immune system weakens muscles — is meeting in the Hampton Roads area of Virginia. Support groups bring together patients and caregivers to share experiences, learn from each other, and find emotional support from others facing the same condition.
WHY IT MATTERSThis local support group provides Hampton Roads patients with MG a chance to connect with others managing the same rare disease, access peer support, and potentially learn about treatment options and coping strategies from people with lived experience.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system weakens muscles, is meeting in the Pacific Northwest region covering Oregon and Washington. Support groups bring together patients and caregivers to share experiences, learn from each other, and find emotional support. This group provides a local community resource for people managing this chronic condition.
WHY IT MATTERSLocal support groups help MG patients connect with others facing the same challenges, reduce isolation, and access peer knowledge about managing symptoms and navigating treatment options in their region.
AdvocacyRSS5 days ago
This is an announcement for a Myasthenia Gravis (MG) support group meeting in the Sacramento-Sierra region of California. The group meets on Saturday mornings at 10:00 AM. Support groups bring together people with the same condition to share experiences, ask questions, and find community support.
WHY IT MATTERSThis support group provides MG patients in Northern California a local opportunity to connect with others managing the same autoimmune condition and access peer support and shared resources.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system attacks muscles and causes weakness, is meeting in St. Petersburg, Florida. Support groups bring together patients and caregivers to share experiences, ask questions, and learn from each other about managing their condition.
WHY IT MATTERSIf you or a loved one has myasthenia gravis in the St. Petersburg area, this support group offers a chance to connect with others facing the same challenges and get practical advice from people living with the condition.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system attacks muscles and causes weakness, is meeting in the Hampton Roads area of Virginia. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others dealing with the same condition.
WHY IT MATTERSIf you or a loved one has myasthenia gravis in the Hampton Roads area, this support group offers a chance to connect with others managing the same rare condition and access local resources and peer support.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system weakens muscles, is meeting in Northeastern Pennsylvania. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others dealing with the same condition.
WHY IT MATTERSThis support group provides a local community resource for MG patients in Northeastern PA to connect with others managing this rare autoimmune condition and access peer support.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG) — a rare condition where the immune system attacks muscles, causing weakness — is meeting in the Pacific Northwest region covering Oregon and Washington. Support groups bring together patients and caregivers to share experiences, get information, and find emotional support from others dealing with the same condition.
WHY IT MATTERSThis support group provides a direct way for MG patients in Oregon and Washington to connect with others managing the same rare autoimmune condition and access peer support that can improve quality of life.
AdvocacyRSS5 days ago
This is an announcement for a Myasthenia Gravis (MG) support group meeting in the Sacramento-Sierra region of California. The group meets on Saturday mornings at 10:00 AM. Support groups bring together people with the same condition to share experiences, ask questions, and get emotional support from others who understand what they're going through.
WHY IT MATTERSIf you or a loved one has myasthenia gravis in the Sacramento area, this support group offers a chance to connect with others managing the same condition and access local resources.
AdvocacyRSS5 days ago
A support group for people with myasthenia gravis (MG), a rare condition where the immune system weakens muscles, is meeting in St. Petersburg, Florida. Support groups bring together patients and caregivers to share experiences, ask questions, and learn from each other about managing their condition.
WHY IT MATTERSIf you or a loved one has myasthenia gravis in the St. Petersburg area, this support group offers a chance to connect with others facing the same challenges and access local resources.