Associated tags: Muscular dystrophy, Dystrophy, ALS, MDA, Research, Muscular Dystrophy Association, Neuromuscular disease, Pharmaceutical industry, Degenerative disease, Doctor of Philosophy, Patient
Locations: UNITED STATES, POMPE, MISSOURI, TX, WASHINGTON, SC, MN, NEW YEAR, FORT LAUDERDALE, RARE, FL, DC, ROME, CHICAGO, IL, US, NEW YORK
Retrieved on:
Wednesday, April 10, 2024
Online,
FDA,
Social media,
Firefighter,
Muscular dystrophy,
MDA,
Heart,
Muscular Dystrophy Association,
Partnership,
Research,
Growth,
International Association,
IAFF,
Boot,
ALS,
Pedestrian,
Pharmaceutical industry Funds raised from IAFF’s Fill the Boot events for MDA accelerate research, advance care, and empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to live stronger and love longer.
Key Points:
- Funds raised from IAFF’s Fill the Boot events for MDA accelerate research, advance care, and empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to live stronger and love longer.
- Online donations will continue, even as fire fighters take to the streets in communities across the country with boots in hand asking pedestrians, motorists, customers, and other passersby to support MDA’s mission.
- Since 1954, our partnership with Muscular Dystrophy Association has advanced breakthroughs in treatments and access to care for families living with neuromuscular diseases.
- "In our journey to end neuromuscular disease, fire fighters remain steadfast allies in our mission," said Donald S. Wood, Ph.D., President and CEO of MDA, reflecting on the 70-year collaboration between Muscular Dystrophy Association and International Association of Fire Fighters.
Research,
Employment,
Entrepreneurship,
Skeletal muscle,
MDA,
ALS,
Partnership,
Air travel,
Education,
Duke University Hospital,
Social media,
Muscular dystrophy,
Muscular Dystrophy Association,
Senior,
Empowerment,
Duchenne muscular dystrophy,
Duchenne,
Clinical trial,
FDA,
Summer camp,
Pharmaceutical industry Charlotte, North Carolina, March 25, 2024 (GLOBE NEWSWIRE) -- Burn Boot Camp, a leading boutique fitness franchise, has teamed up with the Muscular Dystrophy Association (MDA) for its eighth annual national 'Be Their Muscle' philanthropic event.
Key Points:
- Charlotte, North Carolina, March 25, 2024 (GLOBE NEWSWIRE) -- Burn Boot Camp, a leading boutique fitness franchise, has teamed up with the Muscular Dystrophy Association (MDA) for its eighth annual national 'Be Their Muscle' philanthropic event.
- Muscular Dystrophy Association is one of Burn Boot Camp's longest-standing national philanthropic partners," explained Morgan Kline, CEO and Co-Founder of Burn Boot Camp.
- "Here at the Muscular Dystrophy Association, we stand hand in hand with Burn Boot Camp in our shared commitment to empower communities nationwide.
- MDA and Burn Boot Camp will be posting throughout the campaign on social media using @MDAorg and @burnbootcamp with #BeTheirMuscle.
HDAC,
Gene expression,
Cell,
Disease,
MDA,
Associate,
Patient,
Research,
DNA,
Public policy,
University,
Muscular dystrophy,
Doctor of Philosophy,
Muscular Dystrophy Association,
Duchenne muscular dystrophy,
Clinical trial,
Therapy,
Histone deacetylase inhibitor,
Stair climbing,
Plasma protein binding,
FDA,
Steroid,
DMD,
Parent,
Lancet,
Pediatrics,
Human,
Food,
Pharmaceutical industry "The approval of Duvyzat (givinostat) provides another significant treatment option for people living with Duchenne muscular dystrophy,” said Sharon Hesterlee, PhD, Chief Research Officer, MDA.
Key Points:
- "The approval of Duvyzat (givinostat) provides another significant treatment option for people living with Duchenne muscular dystrophy,” said Sharon Hesterlee, PhD, Chief Research Officer, MDA.
- “Muscular Dystrophy Association’s funding was fundamental for the discovery of HDACi in the treatment of Duchenne muscular dystrophy.
- “We’re excited to celebrate this additional treatment option for people living with Duchenne muscular dystrophy.
- My son is an example,” said Jessica Curran, MDA family member and mother of Conner who lives with Duchenne muscular dystrophy.
Retrieved on:
Wednesday, March 13, 2024
Cleveland Browns,
Nyheim Hines,
ALS,
MDA,
Partnership,
Muscular dystrophy,
Research,
Muscular Dystrophy Association,
Family,
NFL,
Neuromuscular disease Hines proudly wears the 2024 limited edition MDA Shamrocks t-shirt designed by MDA Board member Matthew Plummer who lives with neuromuscular disease.
Key Points:
- Hines proudly wears the 2024 limited edition MDA Shamrocks t-shirt designed by MDA Board member Matthew Plummer who lives with neuromuscular disease.
- With family members who live or have lived with muscular dystrophy, Hines continues to generate awareness and raise critical funds for the neuromuscular disease community.
- "It's truly humbling to continue to raise awareness for the neuromuscular disease community through the mission of Muscular Dystrophy Association.
- It’s our privilege to collaborate with Nyheim to bring the fruits of our mission to his family and millions more across the country."
Retrieved on:
Thursday, February 29, 2024
Rare disease,
Wheelchair,
Disability,
Aircraft,
Air travel,
Doctor of Philosophy,
Air Carrier Access Act,
Injury,
Dehumanization,
Muscular dystrophy,
Safety,
Empowerment,
Muscular Dystrophy Association,
ACAA,
Joe Biden,
Fear,
Policy,
DOT,
Public policy,
MDA,
Travel,
Airline Donald S. Wood, PhD, President and CEO of the Muscular Dystrophy Association said, “I am immensely proud of the tireless efforts of MDA’s staff and advocates.
Key Points:
- Donald S. Wood, PhD, President and CEO of the Muscular Dystrophy Association said, “I am immensely proud of the tireless efforts of MDA’s staff and advocates.
- This monumental proposal on accessible air travel reaffirms our commitment to serving families and we stand in solidarity with the disability community, championing inclusivity and accessibility in every facet of life.
- This proposal represents a transformative stride towards empowering individuals to travel without the burden of fear, injury, or dehumanization."
- Stay informed and engaged as we navigate the path towards a more accessible and inclusive world.
Retrieved on:
Thursday, February 15, 2024
Boston University,
Division,
ALS,
Research,
Doctor of Philosophy,
MD,
Professor,
Neuromuscular disease,
Genetic distance,
Hope,
Conference,
Congenital muscular dystrophy,
Muscular dystrophy,
Muscular Dystrophy Association,
Human,
Northwestern Medicine,
Therapy,
News,
Diagnosis,
Myopathy,
Today (American TV program),
MDA,
CBS News,
Speech,
Episcopal conference New York, Feb. 15, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) today announced Brooke Eby will be the keynote speaker at the 2024 MDA Clinical & Scientific Conference (being held in Orlando, FL March 3-6), where she will address the world’s leaders in neuromuscular disease research and care.
Key Points:
- New York, Feb. 15, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) today announced Brooke Eby will be the keynote speaker at the 2024 MDA Clinical & Scientific Conference (being held in Orlando, FL March 3-6), where she will address the world’s leaders in neuromuscular disease research and care.
- As the largest US gathering focused solely on neuromuscular diseases including ALS, the 2024 MDA Clinical & Scientific Conference promises to delve into the latest research advancements and clinical achievements in the field.
- "We are honored to have Brooke Eby grace our conference to share her story and insights as a patient and as a patient advocate," remarked Sharon Hesterlee, Ph.D., Chief Research Officer, MDA.
- Members of the neuromuscular community who are registered with MDA are welcome to participate in the virtual conference at no-cost.
Retrieved on:
Thursday, February 1, 2024
Policy,
Occupancy,
CFO,
Hospital,
Neuromuscular disease,
Travel,
Wheelchair,
MDA,
Therapy,
Muscular Dystrophy Association,
Muscular dystrophy,
Caregiver,
Child,
Safety,
Patient,
CMD,
Atmosphere,
Cure Rare Disease,
Disease,
Public policy,
Air travel,
NMD,
VCP,
DMD,
Empowerment,
Organization,
Nursing “Muscular Dystrophy Association is proud to announce the recipients of the MDA Advocacy Collaboration Grants.
Key Points:
- “Muscular Dystrophy Association is proud to announce the recipients of the MDA Advocacy Collaboration Grants.
- “The Child Neurology Foundation is thrilled to be a recipient of Muscular Dystrophy Association’s Advocacy Collaboration Grants program to support the development of a comprehensive Needs Assessment Survey,” said Katie Hentges, Director of Programs.
- “The Muscular Dystrophy Association Advocacy Collaboration Grant will enable Cure CMD to continue its legislative advocacy work and provide skills training, resources, and advocacy opportunities for the CMD community,” said Lani Knutson, Cure CMD Advocacy Team Lead.
- Other innovative programs, campaigns, or initiatives that can measurably impact one or more of MDA and the collaborating organizations’ common advocacy goals.
Retrieved on:
Tuesday, January 30, 2024
Vivisection,
Muscular dystrophy,
Hospital,
Neuromuscular disease,
Immune system,
Episcopal conference,
MDA,
MD,
Muscular Dystrophy Association,
Patient,
Reward,
AAV,
Protein,
Regenerative medicine,
DMD,
Duchenne muscular dystrophy,
Doctor of Philosophy,
University,
Conference,
Vaccine The award will be presented at the 2024 MDA Clinical & Scientific Conference on Monday, March 4, by Louis Kunkel, PhD , of Boston Children’s Hospital.
Key Points:
- The award will be presented at the 2024 MDA Clinical & Scientific Conference on Monday, March 4, by Louis Kunkel, PhD , of Boston Children’s Hospital.
- The MDA Legacy Award for Achievement in Research is an annual recognition for outstanding accomplishments in neuromuscular disease research.
- "The Muscular Dystrophy Association is elated to celebrate Dr. Chamberlain and honor him with the 2024 MDA Legacy Award for Achievement in Research for his achievements in translational research.
- The previous recipient of the MDA Legacy Award for Achievement in Research in 2023 was Merit Cudkowicz, MD, MSC Massachusetts General Hospital, for her achievements in clinical research.
Life,
Volunteering,
Muscular Dystrophy Association,
Harley-Davidson,
Community engagement,
Muscular dystrophy,
Biogen,
General Motors,
National Association,
NALC,
Neuromuscular disease,
MDA,
Creativity,
Magic,
Counselor,
Summer camp,
Tourism New York, Jan. 22, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) announced today the opening of registration for both campers and volunteers for its MDA Summer Camp program.
Key Points:
- New York, Jan. 22, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) announced today the opening of registration for both campers and volunteers for its MDA Summer Camp program.
- MDA Summer Camp serves children and young adults ages 8 to 17 living with muscular dystrophy and related neuromuscular diseases.
- Last summer, more than 800 campers attended MDA Summer Camp, with nearly 600 volunteers.
- As is the case every year, MDA Summer Camp is offered on a first-come, first-served basis at no cost to participants.
Muscular Dystrophy Association,
Conference,
SPSMA,
Family,
Culture,
Neuromuscular disease,
Caregiver,
Muscular dystrophy,
Research,
Disability,
MDA,
Hope,
Parent,
University,
Empowerment,
SMA,
Bethlem myopathy,
Human,
Motivation,
Volunteering,
Social media,
Environment,
Nursing New York, Jan. 08, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) has selected 39-year-old Ira Walker from Fort Lauderdale, Florida, as its 2024 MDA National Ambassador.
Key Points:
- New York, Jan. 08, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) has selected 39-year-old Ira Walker from Fort Lauderdale, Florida, as its 2024 MDA National Ambassador.
- Walker joins 16-year-old National Ambassador Leah Zelaya from Brooklyn, New York, who continues her second year representing the organization.
- “It is my honor to accept the role as Muscular Dystrophy Association’s National Ambassador in 2024.
- MDA National Ambassadors play an integral role in furthering the mission of the Muscular Dystrophy Association to accelerate research, advance care, and empower the families we serve through their unique voices and perspectives.
