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We're proud to announce our valued partners at the Albertsons Companies and their banner stores donated over $1million to Muscular Dystrophy Association (MDA) in 2023! These funds support critical resources for families in communities across the country. At MDA, we believe in the power of community and we are so grateful to both Albertsons Companies and THE ALBERTSONS COMPANIES FOUNDATION, and their employees and customers for uniting local communities across the country to support our mission. Together we are accelerating research, advancing care, and advocating to empower people living with #MuscularDystrophy, #ALS and related #neuromuscular diseases.
We are honored to announce that Muscular Dystrophy Association's Gene Therapy Support Network has won the Patient Advocacy Award at the 2024 Advanced Therapies Awards! Thank you to the team at Phacilitate, we are grateful for this recognition, and we congratulate our fellow nominees and awardees. Barry Byrne, MD, PhD, Chief Medical Advisor for MDA, and Vice President, Healthcare Services Nora C. were thrilled to be in attendance to accept this award. The MDA Gene Therapy Support Network is an expansion of the renowned MDA Resource Center for families living with #MuscularDystrophy #ALS and related #neuromuscular diseases. This has been a breakthrough year and we are now in the 'era of treatment' after decades of building the field and community for people living with neuromuscular disease. We remain committed to our mission to accelerate research, advance care, and advocate for access to empower families. With the first ever FDA approved #GeneTherapy treatment for #Duchenne #MuscularDystrophy, the MDA Gene Therapy Support Network is meeting the moment we've worked decades for, and we continue to serve families through resources and support in coordination with our research program, the MDA Care Center Network, and advocacy. Thanks for our partners at Syneos Health for building the program with us. The #neuromuscular community may contact the MDA Resource Center and the MDA Gene Therapy Support Network for resources and support by phone at 1-833-ASK-MDA1 (1-833-275-6321) o
Exciting news: registration for both campers and volunteers for Muscular Dystrophy Association Summer Camp is officially open! MDA Summer Camp provides opportunities for children and young adults ages 8 to 17 living with muscular dystrophy and related neuromuscular diseases to participate in enriching recreational experiences that promote independence, self-advocacy, self-confidence, and development of critical life skills, all while forging lifelong friendships. “For anyone who has ever been a part of it, you know there is a certain magic about MDA Summer Camp. We’re proud to continue building upon the incredible legacy of this nearly 70-year program that impacts the lives of so many in our community. We look forward to welcoming campers and volunteers to camp at sessions across the country this summer. When kids attend summer camp, they gain independence, learn to accept, and direct personal care from someone other than their typical caregivers, try new things and build confidence, and spend time with peers who understand what it’s like to live with a neuromuscular disease. It’s such a unique and life-changing program people look forward to – and that’s why we say camp is the best week of the year,” said Alicia Dobosz, Vice President, Community Engagement. We can’t do this without our #volunteers, who provide essential support for #MDA #SummerCamp. Register for camp or sign up to volunteer today: https://lnkd.in/e87nW-yV
New York State Governor Kathy Hochul continues to be a champion for the mission of Muscular Dystrophy Association to #EndALS and #neuromuscular diseases including #Duchenne #MuscularDystrophy and continually supports the #RareDisease community we serve. Tomorrow, she is set to propose an appropriation to provide one of the largest sums ever invested by a state into research of #AmyotrophicLateralSclerosis, #ALS. The appropriation would commit $25 million to research, creating a program that would support various endeavors, including drug development, according to The New York Times. The governor said she hoped the program could serve as an outline for tackling other #RareDiseases as well. Ms. Hochul’s mother, Patricia Courtney, died from A.L.S., also known as #LouGehrigsDisease, in 2014. She never saw her daughter become lieutenant governor or governor. But last week, as Ms. Hochul stood in the State Assembly and outlined her goals for the coming year in her State of the State address, she had her mother in mind as she announced her commitment to funding research into “rare diseases like A.L.S., that rob millions, like my own mother, of their vitality.” Governor Hochul has also been a champion to support efforts for newborn screening for other #neuromuscular diseases including #Duchenne #MuscularDystrophy. In October 2023, Governor Hochul signed a bill making newborn screening for Duchenne muscular dystrophy mandatory for all babies born in the state.
Introducing our newest MDA National Ambassador, Ira Walker from Fort Lauderdale, Florida. Walker joins 16-year-old National Ambassador Leah from Brooklyn, New York, who continues her second year representing Muscular Dystrophy Association. Walker, who lives with spinal muscular atrophy (SMA) type 2, will share his story and raise awareness for our mission to empower the people we serve to live longer, more independent lives. “It is my honor to accept the role as Muscular Dystrophy Association's National Ambassador in 2024. What a wonderful way to kick off the New Year for this nonprofit organization that has brought so much joy and support to my family throughout my life,” said Walker. “I always knew that I would work professionally full time and achieve my goals regardless of my disability by modifying my environment, being a good communicator, and letting people know when I needed help. I look forward to continuing to motivate myself and others by raising my voice for the MDA community!”
As families gather this holiday season and look to the coming year with hope, the dedicated partnership of Acosta Group reflects the power of giving. For 38 years, this partnership has furthered the mission of the Muscular Dystrophy Association to accelerate research, advance care, and advocate for people living with #neuromuscular disease. We want to thank everyone at Acosta, from the leadership of President and CEO Brian Wynne, to the employees and customers who have made this historic milestone of reaching $100 million possible. We also thank our MDA staff, volunteers, ambassador families and donors, who participated through the decades in the Aisles of Smiles program. Together we are continuing to illuminate the path for breakthroughs, and we are grateful for Acosta Group’s unwavering support. Join us alongside Acosta Group in being a #LightOfHope at MDA.org/HOLIDAY. Read more: https://lnkd.in/eDW2eEcY
The Muscular Dystrophy Association is committed to supporting policies and initiatives that make a positive impact on the lives of children and adults living with neuromuscular diseases. This year, our efforts reached new heights, with three visits to The White House, where we championed the needs of our community at the highest levels of government. As the year ends, we ask for your donations in support of the MDA Public Policy and Advocacy program. Your donations help ensure our collective voice is heard! Donate at mda.org/HOLIDAY #MDA #LightOfHope
Happy #GivingTuesday! Having seen his close family members live with a #neuromuscular disease, MDA’s mission means a lot to Nyheim Hines, MDA National Spokesperson and Buffalo Bills running back. This Giving Tuesday, join Nyheim in supporting MDA by making a donation at MDA.org/HOLIDAY Your donation will empower families like Nyheim’s who live with neuromuscular disease to live longer, more independent lives. #LightOfHope
#GivingTuesday is TOMORROW! Your support illuminates the path of progress in research, advocacy, and access to care for people living with #neuromuscular disease. Thanks to you, this year has been filled with breakthroughs, hope, and resilience. This Giving Tuesday, let’s continue this powerful momentum at MDA.org/HOLIDAY #LightOfHope
Volunteering for Muscular Dystrophy Association Summer Camp taught Devin Jensen to go above and beyond for MDA families and he did just that! He became an MDA STEM Mentor with many others and devoted his time and energy to finding solutions for people living with disabilities, and more accessible solutions in technology as an engineer at Microsoft. Devin says “Volunteering for STEM Explorations over the past two years has been an incredible experience. It's been amazing watching the participants come to the realization that they have the ability to pursue meaningful careers in these important fields. It's such an important step in the right direction for much-needed inclusion in STEM.
