Editing Muscular Dystrophy Association (section)

== Awards ==
'''Research!America Advocacy Award (2025)'''<ref>{{cite web |url=https://www.researchamerica.org/press-releases-statements/researchamerica-advocacy-awards-to-recognize-nations-outstanding-leaders-for-medical-and-health-research/ |title=Research!America Advocacy Awards to Recognize Nation's Outstanding Leaders for Medical and Health Research |website=Research!America |date=2025 |access-date=2024-11-07}}</ref>

In 2025, MDA received the Research!America Advocacy Award in recognition of its work in research and advocacy for neuromuscular diseases.

=== Institutional Awards ===
* **Paul G. Rogers Distinguished Organization Advocacy Award - Research!America Advocacy Awards (2025)**  
   MDA received this prestigious award for its advocacy and leadership in neuromuscular disease research and care.<ref>{{Cite web |date=2024-10-15 |title=Research!America Advocacy Awards to Recognize Nation’s Outstanding Leaders for Medical and Health Research |url=https://www.researchamerica.org/press-releases-statements/researchamerica-advocacy-awards-to-recognize-nations-outstanding-leaders-for-medical-and-health-research/ |access-date=2025-01-30 |website=Research!America |language=en-US}}</ref>

* **The Patient Advocacy Award (Non-profit) - Advanced Therapies Awards (2024)**  
   Awarded to MDA's Gene Therapy Support Network for its contributions to advancing gene therapy initiatives.<ref>{{Cite web |title=Winners – advancedtherapiesawards |url=https://advancedtherapiesawards.phacilitate.com/winners/ |access-date=2025-01-30 |language=en-US}}</ref>

* **Print Publication Finalist - PR Daily Awards (2024)**  
   Recognized for MDA’s publication, *Quest Media Print*, showcasing efforts in communicating with patients and families.<ref>{{Cite web |last=Minnick |first=Jon |date=2024-10-03 |title=PR Daily Awards and Top Agencies finalists and honorees announced: See the full list |url=https://www.prdaily.com/pr-daily-awards-and-top-agencies-finalists-and-honorees-announced-see-the-full-list/#Print%20Publication |access-date=2025-01-30 |website=PR Daily}}</ref>

* **Sonia Skarlatos Public Service Award – American Society of Gene + Cell Therapy**  
   Awarded to MDA for excellence in public service within the scientific community.<ref>{{Cite web |title=Sonia Skarlatos Public Service Award {{!}} ASGCT - American Society of Gene & Cell Therapy {{!}} ASGCT - American Society of Gene & Cell Therapy |url=https://www.asgct.org/awards/honorific-awards/sonia-skarlatos-public-service-award |access-date=2025-01-30 |website=www.asgct.org}}</ref>

==== Team/Group Awards ====
* **Top 100 Marketing Teams - OnConference (2024)**  
   Acknowledging MDA’s Marketing and Communications team for their innovative strategies.<ref>[OnConference 2024](https://www.onconferences.com/24-coo-winners)</ref>

* **Drive Purpose Campaign - PR Daily Content Marketing Awards (2024)**  
   For the #AccessibleAirTravel campaign that advocates for accessibility in air travel.<ref>[PR Daily Content Marketing Awards 2024](https://www.prdaily.com/congratulations-to-the-winners-of-pr-dailys-social-media-digital-content-marketing-awards/)</ref>

* **Call to Action - 16th Annual Shorty Award Finalist and Audience Honor**  
   Recognized for the #AccessibleAirTravel campaign, promoting accessibility awareness.<ref>[Shorty Awards 16th Annual](https://shortyawards.com/16th/winners)</ref>

* **Call to Action – 9th Annual Shorty Award Finalist**  
   Acknowledging the impactful messaging of the #AccessibleAirTravel campaign.<ref>[Shorty Awards 9th Annual](https://shortyawards.com/9th-impact/finalists/)</ref>

* **Federal Advocacy by a Patient Advocate or Organization - EveryLife Foundation RareVoice Awards (2023)**  
   Honoring MDA’s advocacy leaders Mindy Henderson and Madison Lawson for their impactful work.<ref>[EveryLife Foundation RareVoice Awards 2023](https://everylifefoundation.org/rare-advocates/rarevoice-awards-2020/rarevoice-awards-recipients/)</ref>

* **Communications Innovation Award - Public Affairs Council Innovation Awards (2024)**  
   Recognizing the #AccessibleAirTravel campaign for innovative communications strategies.<ref>[Public Affairs Council Innovation Awards 2024](https://pac.org/innovation-award-winners-in-communications-grassroots-and-lobbying-honored-at-the-advocacy-conference)</ref>

==== Individual Awards ====
* **Most Valuable Philanthropist Award - Major League Baseball Players Association (2024)**  
   Rhys Hoskins, an MDA advocate, received this award for his philanthropic efforts.<ref>[MLB Players Choice Awards 2024](https://www.mlb.com/news/players-choice-awards-2024)</ref>

* **Marvin Miller Man of the Year Award - Major League Baseball Players Association (2024)**  
   Awarded to Rhys Hoskins for his advocacy on behalf of MDA.<ref>[MLB Players Choice Awards 2024](https://www.mlb.com/news/players-choice-awards-2024)</ref>

* **The Top 50 Women Chief Development Officers of 2024 – Women We Admire**  
   Ruth Ann Daily, MDA's Chief Development Officer, received this honor for her leadership in philanthropy.<ref>[Women We Admire 2024](https://thewomenweadmire.com/2024/09/12/the-top-50-women-chief-development-officers-of-2024/)</ref>

* **Top Women in Marketing - Ragan Team Leaders (2024)**  
   Morgan Roth, MDA’s Chief Marketing Officer, was recognized for her strategic contributions to marketing.<ref>[Ragan Team Leaders 2024](https://www.prdaily.com/pr-daily-announces-the-top-women-in-marketing-class-of-2024-honorees/#Team%20Leaders)</ref>

* **Top 50 Chief Operations Officer - OnConference (2024)**  
   Mike Kennedy, MDA’s Chief Financial Officer and Chief Operating Officer, was honored for his operational excellence.<ref>[OnConference 2024](https://www.onconferences.com/24-coo-winners)</ref>

* **Henry Viscardi Achievement Award (2023)**  
   Awarded to Mindy Henderson, MDA’s Vice President of Disability Outreach & Empowerment, for her contributions to advocacy.<ref>[The Viscardi Center 2023](https://viscardicenter.org/2023-henry-viscardi-achievement-awards-recipients-announced/#:~:text=The%202023%20Henry%20Viscardi%20Achievement,%E2%80%9D%20Zografopoulos%2C%20Z%20Life%2C%20U.S.)</ref>

* **Marcoms Most Influential List - The PRNet (2023)**  
   Mary Fiance, MDA’s Vice President of Strategic Communications, was recognized for her influence in communications.<ref>[The PRNet 2023](https://theprnet.com/journals/the-pr-net-mmi-awards)</ref>

=== National Ambassador ===
MDA has a tradition of selecting National Ambassadors who are people living with neuromuscular disease.<ref>{{Cite web|title=Ira Walker, living with SMA type 2, named MDA National Ambassador|url=https://smanewstoday.com/news/ira-walker-living-sma-type-2-named-mda-national-ambassador/|website=smanewstoday.com|date=12 January 2024 |access-date=2024-05-31}}</ref> Since 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.<ref>{{Cite web|title=Meet Reagan Imhoff, National Goodwill Ambassador for MDA|url=https://medium.com/@cmoyer/meet-reagan-imhoff-national-goodwill-ambassador-for-mda-ad4cd22c7639|website=Medium|date=16 February 2017 |access-date=2023-08-18}}</ref><ref>{{Cite web|title=Muscular Dystrophy Association Announces 2023 National Ambassador Leah Zelaya from New York|url=https://finance.yahoo.com/news/muscular-dystrophy-association-announces-2023-150000632.html|website=Yahoo Finance|date=23 January 2023 |access-date=2023-08-18}}</ref> 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 the 1980s, were referred to as "[[poster child]]ren". In 1952, the MDA inaugurated Michael Danna as its first Poster Child.<ref>{{Cite web|title=MDA National Ambassadors Share the Everyday Impact of Neuromuscular Disease|url=https://www.mobilityworks.com/blog/mda-national-ambassadors-share-the-everyday-impact-of-neuromuscular-disease/|website=Mobility Works|date=6 February 2020 |access-date=2023-08-18}}</ref> 

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.''<ref>{{Cite web|title=Matthew 'Mattie' Stepanek, 13; Poet, Peacemaker|url=https://www.latimes.com/archives/la-xpm-2004-jun-24-me-mattie24-story.html|website=Los Angeles Times|date=24 June 2004 |access-date=2023-08-18}}</ref> Another notable ambassador 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.<ref>{{Cite web|title=Decatur youth featured in ad debuting during Oscars|url=https://www.al.com/news/2021/04/decatur-youth-to-be-featured-in-ad-debuted-during-oscars.html|website=AL.com|date=25 April 2021 |access-date=2023-08-18}}</ref>

=== Research ===
In 1986, MDA-funded researcher [[Louis M. Kunkel]] identified the [[dystrophin]] gene, the gene for Duchenne muscular dystrophy (DMD) and [[Becker muscular dystrophy]] (BMD).<ref>{{Cite web|last=Weidman Burke|first=Chelsea|title=The Time for DMD Gene Therapy is Now: A Chat with the MDA|url=https://www.biospace.com/article/the-time-for-dmd-gene-therapy-is-now-a-chat-with-the-mda/|access-date=2021-07-07|website=BioSpace|language=en-US}}</ref> MDA funded the first [[gene therapy]] [[Clinical trial|trial]] in 1999, followed by the first vector-based gene therapy trial for DMD in 2006.<ref>{{Cite book|last=Agencies|first=United States Congress Senate Committee on Appropriations Subcommittee on Departments of Labor, Health and Human Services, Education, and Related|url=https://books.google.com/books?id=fi5JhCJsxC0C&dq=MDA+funded+the+first+gene+therapy+trial+in+1999&pg=PA18|title=Muscular Dystrophy: Hearing Before a Subcommittee of the Committee on Appropriations, United States Senate, One Hundred Seventh Congress, First Session, Special Hearing, February 27, 2001, Washington, DC.|date=2001|publisher=U.S. Government Printing Office|isbn=978-0-16-065977-5|language=en}}</ref>

In 2007, MDA funded [[Adrian R. Krainer]] and his colleagues at the [[Cold Spring Harbor Laboratory]] in [[Laurel Hollow, New York|Laurel Hollow]], [[New York (state)|New York]] for the early-stage development of [[nusinersen]]. Nusinersen became [[Food and Drug Administration|FDA]] approved in 2016 as the first treatment for spinal muscular dystrophy (SMA).<ref>{{Cite journal|last=Neurology|first=The Lancet|date=2020-03-01|title=Leading the way for neuromuscular disorders since 1950|journal=The Lancet Neurology|language=English|volume=19|issue=3|pages=195|doi=10.1016/S1474-4422(20)30027-2|issn=1474-4422|pmid=32085828|doi-access=free}}</ref>

As of 2018, MDA had a total funding commitment of more than $58 million distributed among 312 research grants.<ref>{{cite web |last1=Luxner |first1=Larry |title=MDA Conference Bringing Neuromuscular Disease Experts to Orlando to Share 'New Era' in Treatment, Research |url=https://charcot-marie-toothnews.com/2019/04/04/mda-conference-bringing-neuromuscular-disease-experts-to-orlando-to-share-new-era-in-treatment-research/ |website=CHarcot-Marie-Tooth News |date=4 April 2019 |access-date=29 September 2021}}</ref> By 2019, MDA supported 252 research projects worldwide, totaling a funding commitment of more than $66 million.<ref>{{cite journal |title=Leading the way for neuromuscular disorders since 1950 |journal=The Lancet Neurology |year=2020 |pmid=32085828 |author1=The Lancet Neurology |volume=19 |issue=3 |page=195 |doi=10.1016/S1474-4422(20)30027-2 |doi-access=free }}</ref>

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 to 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 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.<ref name="neulive" />

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 the production of a protein called micro-dystrophin in patients' muscles.<ref>{{Cite magazine|title=FDA Approves First Gene Therapy for Duchenne Muscular Dystrophy|url=https://time.com/6289317/fda-approves-first-gene-therapy-for-duchenne-muscular-dystrophy/|magazine=Time|access-date=2023-08-18}}</ref> Advancements in Duchenne muscular dystrophy treatment have prompted MDA to lobby for newborn screening panels for early detection and treatment initiation.<ref>{{Cite web|title=UPDATE ON PPMD'S NEWBORN SCREENING EFFORTS|url=https://www.parentprojectmd.org/update-on-ppmds-newborn-screening-efforts/|website=Parent Project Muscular Dystrophy|date=31 May 2023 |access-date=2023-08-18}}</ref>