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48-613: The Uniformed Firefighters Association of Greater NY is Local 94 of the International Association of Fire Fighters , the union representing New York City Firefighters . Founded in 1917, the UFA is a non-profit advocacy organization representing the health, safety and interests of New York City Firefighters. This article related to a North American labor union or trade union is a stub . You can help Misplaced Pages by expanding it . This article relating to firefighting

96-698: A bill that would amend the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). MDA argued that "a great deal of work still needs to be done, and increased federal support is needed to ensure that researchers can continue making progress toward finding a cure." In December 2021, President Joe Biden signed the Accelerating Access to Critical Therapies for ALS Act into law. The act aimed to speed up

144-486: A funding commitment of more than $ 66 million. MDA is actively involved in supporting the development of gene therapies for rare neuromuscular diseases. In 2023, the association introduced the Kickstart Program to lower the barriers for gene therapy development. The program assembles a team of experts to collaboratively assist selected projects, positioning them for follow-on grant funding. The Kickstart Program

192-626: A larger percent of its donations to Republican candidates than any other union. The IAFF follows a simple philosophy when it supporting candidates – they support those who support fire fighters, regardless of party affiliation or political leanings. The IAFF Charitable Foundation was formed in 2011 to assist IAFF union members and their families if affected by natural disaster (including hurricanes, earthquakes, floods) promotes fire and burn prevention, advocates for fire fighter health and safety, and provides public education on how to prevent and recover from burn trauma. The IAFF Fallen Fire Fighter Memorial

240-585: A lifetime achievement awards for their contributions to the health and welfare of humanity. Dr. Stanley Appel established Houston Methodist Hospital's amyotrophic lateral sclerosis clinic with MDA in 1982, which has evolved into the MDA ALS Research and Clinical Center at the Houston Methodist Neurological Institute. Dr. Appel's pioneering work includes the development of an immunotherapy treatment that may slow

288-691: A quarterly magazine, Quest, catering to people with neuromuscular diseases and their caretakers. Mindy Henderson, diagnosed with type 2 spinal muscular atrophy (SMA) and a patient advocate, is the editor-in-chief as of 2023. The magazine, with a circulation of around 100,000, extends its reach through distribution at neurologists' offices and the MDA's network of 150 care centers across the country. Besides focusing on science and research, Quest's coverage includes adaptive lifestyles, travel, medical equipment, accessible fashion, employment, and media representation. Every summer, for one week, thousands of children from across

336-513: A severe form of muscular dystrophy, ALS (amyotrophic lateral sclerosis), and Charcot–Marie–Tooth disease (CMT), which impacts peripheral nerves. MDA also addresses numerous rare disorders, such as Andersen–Tawil syndrome , Laing distal myopathy , and Walker–Warburg syndrome . Additionally, the association covers conditions like Becker muscular dystrophy (BMD), congenital muscular dystrophies (CMD), myotonic dystrophy (DM), spinal muscular atrophy (SMA), and myasthenia gravis (MG). MDA supported

384-470: Is Ethan LyBrand, who has Duchenne muscular dystrophy and gained national recognition for his Shorty Award-winning "Joke-A-Day for MDA" campaign during the COVID-19 pandemic. In 1986, MDA-funded researcher Louis M. Kunkel identified the dystrophin gene, the gene for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD). MDA funded the first gene therapy trial in 1999, followed by

432-870: Is a stub . You can help Misplaced Pages by expanding it . International Association of Fire Fighters The International Association of Fire Fighters ( IAFF ) is a labor union representing paid full-time firefighters and emergency medical services personnel in the United States and Canada . The IAFF was formed in 1918 and is affiliated with the AFL–CIO in the United States and the Canadian Labour Congress in Canada. The IAFF has more than 344,440 members in its more than 3,500 affiliate organizations. Its political action committee, FIREPAC,

480-585: Is a permanent remembrance of IAFF members and emergency medical services personnel who have lost their lives in the line of duty. An annual Fallen Firefighters memorial ceremony is held each year in September in Colorado Springs, Colorado (with the exception of 2020 and 2021 due to the Coronavirus (Covid-19) pandemic). More than 8,800 names of fallen IAFF members are etched on the wall. The IAFF

528-439: Is intended for union members only and will offer treatment for recovery from post-traumatic stress and co-occurring addictions in hopes to help members return to the job. The center also will serve to train and educate peer support members in the treatment of post-traumatic stress and substance abuse in the fire fighter population. The ultimate goal is to develop protocols for fire departments to use to help fire fighters. Each year

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576-575: Is one of the most active PACs in the country. The IAFF was formed in 1918. The IAFF has fought for better wages, benefits, working conditions and improved safety for union members. The IAFF has also pushed for more full-time union firefighters. The IAFF has announced plans to open the Center of Excellence for Behavioral Health Treatment and Recovery in 2017 located in Upper Marlboro, Maryland (outside Washington, DC). The IAFF Center of Excellence

624-588: Is recognized as the largest network of multidisciplinary clinics specializing in neuromuscular diseases in the United States, with over 150 clinics distributed throughout the country. In addition to offering specialized care, these centers are also active sites of research. In 2023, MDA expanded its Resource Center by launching the Gene Therapy Support Network. This network provides resources and guidance about approved gene therapies for people living with neuromuscular diseases, aiming to help

672-619: Is recognized by the Better Business Bureau's Wise Giving Alliance as an accredited charity that meets all 20 Standards for Charity Accountability. As of the year ending December 31, 2022, MDA reported significant funding directed towards patient and community services, professional public health education, and research. The organization's financial activities, leadership compensation, and fundraising methods are transparently disclosed, emphasizing their commitment to accountability and ethical practices. Charity Navigator , which

720-470: Is the federally registered political action committee of the IAFF. FIREPAC was established in 1978 and has grown into the top one percent of all federally registered PACs. During the 2009 – 2010 election cycle FIREPAC raised $ 5.3 million and was the tenth largest PAC in terms of donations to federal candidates. Within organized labor, FIREPAC has been the most bi-partisan PAC during the last decade, contributing

768-662: Is the largest independent evaluator of charities, gives MDA two out of four stars based on Financial, Accountability, and Transparency Performance Metrics. In 2019, CharityWatch gave MDA a grade of D, citing many financial issues in the organization. MDA has received the Candid Platinum Seal of Transparency from GuideStar , recognizing its commitment to transparency and accountability. MDA and Lewis have been criticized by disability rights activists for their tendency to paint disabled people as, these advocates say, "pitiable victims who want and need nothing more than

816-715: Is the largest national sponsor of the Muscular Dystrophy Association (MDA). Members raise funds primarily through the "Fill the Boot" campaign, which helps fund MDA summer camps for children, professional and public health education and other programs. Total donations since 1954 are over $ 558 million. Since 1966 the International Association of Fire Fighters has appeared on and co-sponsored The Jerry Lewis MDA Labor Day Telethon . Muscular Dystrophy Association The organization

864-647: The Newborn Screening Saves Lives Reauthorization Act of 2013 (H.R. 1281; 113th Congress) , a bill that would amend the Public Health Service Act to reauthorize grant programs and other initiatives to promote expanded screening of newborns and children for heritable disorders. The MDA argued that "many of the drug therapies currently under development for MDA's community will be of most benefit if administered either presymptomatically or early in

912-506: The 1980s, were referred to as "poster children". In 1952, the MDA inaugurated Michael Danna as its first Poster Child. One of the most well-known ambassadors was Mattie Stepanek , the National Goodwill Ambassador from 2002 until his death in 2004, notable for his best-selling Heartsongs series of poetry books, and his appearances on The Oprah Winfrey Show and Good Morning America. Another notable ambassador

960-569: The 2020 telethon included Jack Black , Josh Gad , Michael B. Jordan , and Jillian Mercado . In November 2020, MDA launched a tool, called the neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP), to help make clinical data more accessible and accelerate discovery of muscular dystrophy treatments. In response to the COVID-19 pandemic, MDA converted several of its traditional programs to virtual formats and introduced new virtual programming. The latter included several Facebook Live events discussing challenges that

1008-546: The IAFF hosts a national legislative conference in Washington, DC that is open to any IAFF member who wishes to register. The IAFF legislative conference is the largest legislative conference of any union in the country. Over the years, attendees have heard from President Bill Clinton , Vice President Joe Biden , members of the Cabinet of both Republican and Democratic administrations, numerous members of Congress, including

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1056-734: The Leadership of the Senate and House of Representatives, and key congressional staff. IAFF as a union represents full-time paid firefighters and emergency medical technicians, and membership is not open to volunteer firefighters . Its bylaws do not allow members to work or volunteer with any other emergency service organization beyond their full-time employer, and can have their membership revoked if they do, though in practice this rarely, if ever happens. FIREPAC (Fire Fighters Interested in Registration and Education Political Action Committee)

1104-673: The MDA Ride For Life program began, a fundraising motorcycle ride held over Labor Day weekend. In 1986, oil and gas provider Citgo became a second national sponsor of the organization. In 1982, the MDA Shamrocks program launched in Grand Rapids, Michigan , and became a national program one year later. In 1996, MDA and Lewis were jointly honored by the American Medical Association with

1152-451: The MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed. However, in 2016, one year before his death, Lewis broke a five-year silence in a video endorsing MDA's redesigned web site and brand, declaring that the work to end muscular dystrophy be continued. Additionally, Lewis' support was so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids . From 2012 to 2014,

1200-520: The United States to raise money for research and patient services. In 2022, MDA resumed in-person Muscle Walks in numerous locations, including Phoenix, Chicago, St. Louis, Detroit, Boston, Twin Cities, Houston, and Dallas, while continuing to offer a virtual Muscle Walk option to enhance participation flexibility. Throughout February and March, retailers across the US contribute to the MDA Shamrocks campaign,

1248-537: The United States. The partnership between MDA and IAFF dates back to 1954, with IAFF designating MDA as its charity of choice. Firefighters across the country have raised $ 690 million over nearly seven decades, leading to breakthroughs in research, FDA-approved treatments, and advocacy efforts such as access to care and newborn screening. MDA's annual payments to IAFF, which ranged from $ 980,000 to $ 1.4 million between 2015 and 2020 according to U.S. Department of Labor filings, received some scrutiny for their size relative to

1296-446: The charity's expenditures. Debuting in 1966 and held annually on Labor Day weekend until 2014, the telethon was originally hosted by veteran film star, comedian and singer Jerry Lewis , who also served as the MDA's national chairman since its inception in 1950 and hosted the show until 2010. In 2005, the MDA made the unprecedented decision to pledge $ 1 million of the telethon's money raised to Hurricane Katrina disaster relief , making

1344-603: The community navigate the complexities of emerging gene therapies. Clinical networking through the MDA Care Center Network contributes additional support by facilitating best practice sharing between different care centers. MDA targets a wide range of neuromuscular diseases, including muscular dystrophies, motor neuron diseases , ion channel diseases, mitochondrial diseases , myopathies , neuromuscular junction diseases , and peripheral nerve diseases. Specific examples include Duchenne muscular dystrophy (DMD),

1392-553: The country who have been diagnosed with neuromuscular diseases are able to attend a camp designated for only them. MDA Summer Camp offers children and young adults the opportunity to participate in recreational activities that foster independence, self-confidence, skill development, and friendships. There is a one counselor to one camper ratio and the entire week the children, ages 8–17, are paired with an adult volunteer. They participate in activities and games and stay overnight. The camps are set up locally and are different weeks throughout

1440-704: The development and approval of therapies for ALS and other neuromuscular diseases. During the signing ceremony President Biden acknowledged the Muscular Dystrophy Association for playing a crucial role in advocating for the legislation. In May 2024, MDA supported the reauthorization of the Federal Aviation Administration (FAA) through a $ 105 billion bill passed by Congress. The legislation includes improvements in air travel accessibility for people with disabilities, representing significant progress in this area. MDA

1488-651: The development of improved care and treatment for the neuromuscular community. The conference also hosts the Annual Insights in Research Investment Summit, which focuses on research and investment stakeholders in neuromuscular diseases. The 2023 conference featured a keynote address by Dr. Peter Marks, director of the FDA's Center for Biologics Evaluation and Research, on the growing impact of gene therapies in treating rare disorders. MDA publishes

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1536-609: The donation specifically to the Salvation Army (though the telethon also urged viewers to give to the American Red Cross ). In 2008, the annual televised fundraiser raised a record $ 65,031,393. Originally broadcast for up to 21½ hours from 1966 to 2010, the event was cut back to six hours in 2011. The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as national chairman; however, on August 3, 2011,

1584-456: The event was broadcast October 24, 2020, at 8 p.m. EDT. The special was a dual-charity event, with proceeds going towards both MDA and "Help From The Hart", an organization founded by the aforementioned new host of the program. Hart's charity announced that it will use its portion of funds raised to "support education, health and social needs programs targeting underserved communities and servicing youth through education scholarships." The telethon

1632-665: The first vector based gene therapy trial for DMD in 2006. In 2007, MDA funded Adrian R. Krainer and his colleagues at the Cold Spring Harbor Laboratory in Laurel Hollow , New York for the early-stage development of nusinersen . Nusinersen became FDA approved in 2016 as the first treatment for spinal muscular dystrophy (SMA). As of 2018, MDA had a total funding commitment of more than $ 58 million distributed among 312 research grants. By 2019, MDA supported 252 research projects worldwide, totaling

1680-438: The largest St. Patrick's Day fundraising initiative in the country. They provide customers with the opportunity to either round up their purchases or donate a specific amount, such as $ 1, $ 3, or $ 5. Customers can write their names on paper shamrocks, which are then displayed in stores to show support for MDA's mission to empower people with neuromuscular diseases to lead longer, more independent lives. MDA's Care Center Network

1728-497: The months of May through August. The entire camp staff are volunteer members and are required to interview and apply with good recommendations. The camp is offered at no cost to campers and their families; the cost of the camp for the campers and volunteers is covered by the many fundraisers the MDA does each year. Started in 2010, the MDA Muscle Walk is an annual 1 to 3.1 mile lap event held in over 150 communities across

1776-508: The muscular dystrophy community. Dr. Wood highlighted MDA's commitment to continuing the vision of its founders through expanded programs and initiatives. Research!America Advocacy Award (2025) In 2025, MDA received the Research!America Advocacy Award in recognition of its work in research and advocacy for neuromuscular diseases. MDA has a tradition of selecting National Ambassadors who are people living with neuromuscular disease. Since

1824-486: The pandemic placed on people with disabilities. It also provided COVID-19 resources and recommendations for neuromuscular patients and providers via its online resource center. Throughout stay at home orders due to the COVID-19 pandemic, MDA shared a "joke of the day" from National Ambassador Ethan Lybrand via their social media channels. In January 2021, MDA announced NFL running back Nyheim Hines as its national spokesperson. The Muscular Dystrophy Association (MDA)

1872-580: The production of a protein called micro-dystrophin in patients' muscles. Advancements in Duchenne muscular dystrophy treatment have prompted MDA to lobby for newborn screening panels for early detection and treatment initiation. During National Boot Day, the MDA partners with the International Association of Fire Fighters (IAFF) to launch Fill the Boot fundraising events. These events help support research, care, and advocacy for families affected by muscular dystrophy, ALS, and related neuromuscular diseases in

1920-727: The program's inception in 1952, over 45 National Ambassadors have shared their experiences to emphasize the need for funding research and developing treatments and cures for neuromuscular diseases. These representatives engage with partners, volunteers, supporters, and notable figures, gaining exposure through social media channels and national media outlets. Former youth ambassadors have pursued diverse fields in adulthood, advocating for improvements in accessibility, early intervention treatments through newborn screening, and advancements in research and care for MDA families and individuals living with disabilities. MDA's National Ambassadors were formerly known as "National Goodwill Ambassadors", which, until

1968-703: The progression of ALS. Dr. Appel's efforts were recognized by the MDA when he received the MDA's Tribute Award in 2022. In October 2020, the MDA Telethon , which had originally run from 1966 to 2014, was reimagined as The MDA Kevin Hart Kids Telethon after a six-year hiatus. The two-hour event was held virtually due to the COVID-19 pandemic , and streamed live on the Laugh Out Loud network and its YouTube channel. Celebrity guests for

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2016-466: The progression of the disease. Thus, for some of the diseases in MDA's program, the availability of a newborn screening program at the time of treatment availability presents the best opportunity for impacting optimal and potential lifesaving treatment outcomes." MDA supported the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress) ,

2064-504: The show was known as the MDA Show of Strength . In early 2015, the organization announced it was discontinuing the show. On September 9, 2020, MDA executives announced plans to relaunch their annual MDA telethon with a new host, comedian Kevin Hart . Entitled The MDA Kevin Hart Kids Telethon , the new two-hour telethon was seen exclusively through participating social media platforms;

2112-483: Was MDA's 70th Anniversary Show, hosted by entertainment TV journalists Nancy O'Dell and Jann Carl . The MDA Clinical & Scientific Conference is a prominent event that gathers over 2,000 professionals, including scientists and clinicians, specializing in neuromuscular diseases. The conference showcases research, fosters collaborations, and promotes the latest advancements in the field. It covers various aspects of research, from pre-clinical to clinical, and supports

2160-503: Was accompanied by a 10-hour Let's Play livestream , called Let's Play For A Cure, which featured DJ and producer Zedd , gaming personality missharvey and esports athletes. The livestream was a part of a week-long "streamathon", which featured esports stars playing games including League of Legends , Ro cket Lea gue , Fortnite , Call of Duty and Fall Guys . Following the Kevin Hart Kids Telethon

2208-433: Was established to lead research and support for individuals affected by muscular dystrophy and related diseases. In a recent [interview]( https://denver-frederick.com/2024/01/12/the-muscular-dystrophy-association-reimagined-a-chat-with-mdas-dr-donald-wood/ ) with Denver Frederick, Dr. Donald Wood, the current CEO of MDA, discussed the organization's founding legacy and its evolving role in reimagining support and research for

2256-636: Was founded in 1950 by a group with personal connections to muscular dystrophy , including Paul Cohen who lived with the disease. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s. In 1954, MDA began its partnership with the International Association of Fire Fighters for its annual Fill the Boot fundraising drive. In 1955, the organization held its first summer camp. In 1980, American motorcycle manufacturer Harley Davidson became an MDA National Sponsor; in 1987

2304-418: Was presented at the 2023 MDA Clinical & Scientific Conference, where discussions focused on opportunities to de-risk gene therapies, current barriers to development, collaborative frameworks, and data management. MDA supported the FDA's decision in 2023 to approve an experimental gene therapy developed by Sarepta Therapeutics that aims to slow the progression of Duchenne muscular dystrophy by facilitating

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