Muscular Dystrophy Association Tribute Awards in Boston Honor Louis Kunkel, Ph.D. of Boston Children’s Hospital, Dr. Brenda Wong of UMass Chan Medical School, Natalie Jacobson former anchor WCVB Channel 5, Tom Graney founding family of IAFF Fill the Boot
NEW YORK, NY – October 4, 2022 – The Muscular Dystrophy Association (MDA) will honor Louis Kunkel, Ph.D. of Boston Children's Hospital, Dr. Brenda Wong of UMass Chan Medical School, Natalie Jacobson former anchor WCVB Channel 5, and Tom Graney, founding family of the International Association of Fire Fighters (IAFF) Fill the Boot fundraising program. The MDA Tribute Awards reception will be held on Thursday, October 27, 2022, from 6-8:30pm at The Westin Copley Place in Boston.
The honorees have contributed to significant progress in accelerating research, advancing care, and advocating for the support of people living with neuromuscular disease. They have all been champions of progress, especially in Duchenne muscular dystrophy (DMD), and today, we are working towards newborn screening for DMD. The MDA Tribute Awards in Boston are notable because they honor individuals who have made extremely significant contributions to progress for people living with DMD through scientific discovery, care, and fundraising. MDA has a strong legacy of innovation around DMD, particularly in Boston, and these awards honor that heritage. Since its inception, MDA has invested more than $225 million in research related to (DMD). In the last five years alone, MDA funded more than $11 million on DMD research grants.
The MDA Tribute Award is presented to acknowledge the legacy and life's work of those whose extraordinary efforts support the patients and families we serve. Throughout MDA's 70+ year history, local volunteers and communities have continued to be at the heart of the organization's mission to empower the people it serves to live longer, more independent lives. The event celebrates strength in community and strength in unity of Boston's volunteers and partners that help make the MDA the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases.
"Hope for a longer, more independent life is now becoming a reality for people living with Duchenne muscular dystrophy and so many other related neuromuscular diseases. And the pipeline of promise – more life empowering treatments and cures – is growing and creating ever more hope for the millions of patients and their families who are at the heart of the Muscular Dystrophy Association's mission and vision. We are pleased to bring together the MDA community in Boston – including our families, medical teams from our MDA Care Center Network, partners, and volunteers. We are honored to present the MDA Tribute Awards to these distinguished recipients who have all made critical contributions that continue to lead to breakthroughs in treatment and care. We could not have made this progress without the funding from longstanding traditions with our partners at the International Association of Fire Fighters (IAFF) and the Fill the Boot program founded by the Graney family at Boston Local 718 from where the IAFF General President, Ed Kelly hails," said Donald S. Wood, Ph.D., President and CEO, MDA.
MDA Tribute Awards – Boston
- MDA Tribute Award recipient: Louis Kunkel, Ph.D., Professor of Genetics and Pediatrics at Boston Children's Hospital and Harvard Medical School, and Member of the MDA Board of Directors and Executive Committee of the Board. Over the past four decades, he has devoted his career to understanding the molecular basis, and developing therapy, for neuromuscular disorders. He is universally recognized for his 1986 identification of dystrophin as the causative gene in Duchenne muscular dystrophy. His work has led to improved diagnosis and rational therapy approaches for muscular dystrophies. His current work centers on developing dystrophin-independent therapies for Duchenne muscular dystrophy to complement existing treatments currently in clinical development. He has received numerous awards for his research, including membership in the National Academy of Sciences and The American Academy of Arts and Sciences. He leads a long-standing effort to develop novel therapies, and has been a member of MDA’s scientific review committees for 30 years.
"I have devoted my career to understanding the molecular basis for different forms of muscular dystrophy and working to develop new therapies," said Louis Kunkel, Ph.D. "I am grateful for all the support I received from MDA, beginning in 1986 when the organization funded my work in identifying dystrophin as the causative gene in Duchenne muscular dystrophy. MDA has supported me throughout my career, and it has been an honor to affiliate with them."
- MDA Tribute Award recipient: Dr. Brenda Wong, MDA Care Center Director at UMass Chan Medical School, Director of the Duchenne Muscular Dystrophy Center, and Professor of Pediatrics & Neurology at UMass Chan. Dr. Wong relocated to Massachusetts in May 2018 to become the founding director of their Duchenne Program. She provides coordinated and collaborative care for patients with Duchenne muscular dystrophy. She was published in the Neuromuscular Disorders Journal in 2020 about their Integrated Practice Unit model (and poster about the IPU model). She has also published many papers on Duchenne muscular dystrophy here.
"I'm so grateful to receive the MDA Tribute Award and for the ongoing support that the MDA has provided to the Duchenne Program at UMass Chan Medical School," said Dr. Brenda Wong. "Ongoing support allows us to provide the very best multidisciplinary care in a single location to help ease the burden for patients and their families. This integrated approach spans the full cycle of care and allows us to seamlessly address the various and specific needs of people living with muscular dystrophy."
- MDA Tribute Award recipient: Natalie Jacobson, MDA Champion and former news anchor with ABC affiliate WCVB Channel 5 in Boston and host of MDA Telethon. A trailblazer, Jacobson became the first female anchor of a Boston evening newscast on WCVB Channel 5 and during her tenure there, she covered local and worldwide events. Her memoir Every Life a Story: Natalie Jacobson Reporting was released in May 2022 including her work in support of the neuromuscular community.
"Throughout the many years of working with the Muscular Dystrophy Association, I have met people who live with unimaginable challenges. They do so with grace and courage and a smile. I have also witnessed compassion at the highest level. People throughout New England give the dollar they don't have, their time and their love that sustains a community. From fire fighter's boot drives, to backyard parties kids themselves organize, to generous donors, to a television station that believes in giving its airtime to help kids, MDA inspires the best in people. Chet and I were proud and grateful to be part of it all," said Natalie Jacobson.
- MDA Tribute Award recipient: Tom Graney, MDA Advocate for a Cure, founding family of Fill the Boot. Retired Deputy Chief Graney of Somerville Fire Department IAFF Local 76 and DHS Coordinator City of Somerville, MA as part of the Urban Area Security Initiative for emergency management and city grants, is the son of George Graney, who urged the International Association of Fire Fighters (IAFF) to adopt the mission of the Muscular Dystrophy Association to support local families across the country, Tom and his family participated in the Fill the Boot fundraising program for decades and have created an impactful legacy of progress for people diagnosed with Duchenne muscular dystrophy and related neuromuscular diseases.
- Background on Fill the Boot born in Dorchester, MA: In 1952, a gentleman named Charlie Crowley was seeking assistance for his disabled sons from IAFF Local 718 at a Boston fire station. He approached fire fighter George Graney and told the story of his sons who had been diagnosed with Duchenne muscular dystrophy and needed wheelchairs. With the assistance of 20 fire fighters at the station, they took to the streets with cans, raising $5,000 – a considerable sum in those days – to provide care for Crowley's children. Now in its 68th year, the IAFF is committed to fundraising and will re-enact this can collection during the MDA Tribute Tour – Boston on October 28 at 9am (location: IAFF Boston Fire Engine 28/Tower Ladder 10, Jamaica Plain, Boston, MA).
"We are excited to host the MDA Tribute Tour in the City that started the Fill the Boot tradition, Boston. Our IAFF members are proud of the partnership we have had with MDA for all of these years and will continue in the fight against muscle disease alongside MDA," said Jay Colbert, IAFF 3rd District Vice President.
"MDA Tribute Tours have celebrated Strength in Unity, Strength in Community in Las Vegas, Nashville, Houston, St. Louis, and now Boston. We can't wait to come together in a show of strength, gratitude, and admiration for these extraordinary individuals who have been tireless in their efforts to support our New England families and communities we serve," said Kristine Welker, Chief of Staff, MDA. "I am a Boston native, growing up in the town where Fill the Boot was born thanks to the Graney family and have many fond memories of Natalie Jacobson anchoring the local news sharing stories and raising awareness of the mission of the Muscular Dystrophy Association on WCVB Channel 5. Who would have ever thought the legacy of both Dr. Brenda Wong and Louis Kunkel, Ph.D. would have such meaningful impact on me as the mother of a child living with a form of Duchenne muscular dystrophy?"
MDA Tribute Tour – Boston – Schedule
- Thursday, October 27:
- 6-8:30pm ET: Tribute Awards reception at The Westin Copley Place
- Friday, October 28
- 9am ET (location: IAFF Boston Fire Engine 28/Tower Ladder 10, Jamaica Plain, Boston, MA): Fire fighters from IAFF Local 718 will replicate the first ‘Fill the Boot' event in honor of Tom Graney and family. Sam Dillon, President of Boston Fire Fighters Local 718 and Jay Colbert, IAFF 3rd District Vice President, will participate in this Fill the Boot with Donald S. Wood, Ph.D., President and CEO, Muscular Dystrophy Association.
- 11am-12noon ET (location: IAFF Boston Fire Engine 28/Tower Ladder 10, Jamaica Plain, Boston, MA): IAFF Local 718 fire fighters will reveal a Magic Wheelchair costume surprise for a local Roslindale high school student who lives with Duchenne muscular dystrophy. Just in time for Halloween, the wheelchair costume will replicate a fire truck with all the bells, whistles, lights, and sirens. This event will be attended by MDA leaders, partners, including Christine Getman, Executive Director of Magic Wheelchair, who is also an MDA family member, and MDA partners from the National Association of Letter Carriers (NALC) Branch 34 who will be on hand to ‘Deliver The Costume' as part of the longstanding ‘Deliver The Cure' fundraising campaign.
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 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.