{"id":11517,"date":"2023-01-12T09:42:37","date_gmt":"2023-01-12T14:42:37","guid":{"rendered":"https:\/\/www.ptcbio.com\/?page_id=11517"},"modified":"2023-09-06T16:16:49","modified_gmt":"2023-09-06T20:16:49","slug":"strive-winners","status":"publish","type":"page","link":"https:\/\/www.ptcbio.com\/grants-and-donations\/strive-awards-program\/strive-winners\/","title":{"rendered":"STRIVE Winners"},"content":{"rendered":"
\n\n\t
\n\t\t\t\t\t\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t
Grants & Donations<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t

STRIVE™ Winners<\/h1><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t
The application window for the 2023\u202fSTRIVE\u202fAwards\u202fis now closed. <\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t
\n\t
    \n\t\t\t\t\t\t\t\t\t
  1. \n\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\tHomepage<\/span>\n\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t\t\t\t\t
  2. \n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tGrants and Donations<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t\t\t\t\t
  3. \n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tSTRIVE Awards Program<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t\t\t\t\t
  4. \n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\tSTRIVE Winners<\/span>\n\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ol>\n<\/nav>\n<\/div>\n\t<\/div>\n\n\n\n
    \"STRIVE<\/figure>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\n\t\t\t\t\t\t\t

    The STRIVE for DMD awards recipients are exceptional organizations committed to supporting people affected by Duchenne. In recognition of their novel and innovative solutions to the unmet needs of the Duchenne community, the groups were awarded grants to enable them to deliver projects to benefit those affected by Duchenne. The details for each of the organizations and their projects are listed below. Please join us in congratulating them and their tireless contributions.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\n\t<\/div>\n<\/div>\n\n

    \n\t

    \n\t<\/span>\n\t2023 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Blue Angels (Adapted Sports Association)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Blue Angels (adapted sports association) is a civil, non-profit, parasports association, whose purpose is the management and promotion of adapted sports. Blue Angels was founded in 2019 by a group of friends who aimed to promote an improvement in the quality of life of people with disabilities, promoting high performance training in adapted sports. The association is located in the city of Rio Claro, in the interior of the state of S\u00e3o Paulo \u2013 Brazil, and currently offers the modalities of wheelchair soccer (Power Soccer), bocce, swimming and athletics.<\/p>\n

    Blue Angels vision fosters social inclusion of people with disabilities through adapted sports activities. With the STRIVE grant, Blue Angels will expand its Power Soccer program, a type of soccer practiced by people who have any kind of motor limitation and use wheelchairs. The organization will hire professionals to assist with the program, increase the number of players and acquire additional equipment needed for the sport.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Blue\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Save Our Sons Duchenne Foundation (SOSDF)\u202f <\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Save Our Sons Duchenne Foundation was founded in 2008 and is the peak body for those living with Duchenne and Becker muscular dystrophy in Australia. The organization\u2019s vision is to find a cure for Duchenne and Becker muscular dystrophy whilst actively working to ensure enhanced quality of life (including quality of educational opportunities) for those young people and their families affected by this condition.<\/p>\n

    As patients with Duchenne transition to adulthood and live independently, they are required to manage their health care. Save Our Sons Duchenne Foundation plans to develop a digital health app to help young men living with Duchenne in the states of Queensland and New South Wales, Australia, to be better prepared both physically and mentally; thereby reducing burdens for self, carers and the health system. The app will help them manage their health to continue to thrive in their communities.\u202f<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Save\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n
    \n\t

    \n\t<\/span>\n\t2022 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    ACDM \u2013 Associacao Cearense de Distrofias Musculares <\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Founded in 2017, the Associacao Cearense de Distrofias Musculares (ACDM) provides people living with Duchenne in north and northeast Brazil and their families guidance and access to therapies.<\/p>\n

    Using the STRIVE grant, ACDM will be launching PROJECT FACILITATE, which aims to ensure students with Duchenne have their needs met while at school. Far too often, these students are left behind. This project will focus on promoting greater school inclusion, facilitating the formal learning process for students with Duchenne, and offering participating individuals greater autonomy and opportunities to develop academically and socially.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Associacao\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Action Duchenne<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Action Duchenne is a charitable organization with a clear vision: a world where lives are no longer limited by Duchenne. An important aspect of their work is to support and empower people with Duchenne as they transition to adulthood.<\/p>\n

    With help from the STRIVE Award funding, Action Duchenne intends to offer six skills-based training courses to young members over the next two years, with topics ranging from
    \nrunning a business to self-empowerment. These courses will be held both through online professional-led training, as well as through residential summer camps, and will equip attendees with new skills to become independent young adults.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Action\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    MDA Hellas \u2013 Muscular Dystrophy Association of Greece<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    MDA Hellas is a non-profit organization aiming to improve the quality of life of people with Neuromuscular Disorders (NMD) in Greece. Currently the organization aids in facilitating medical care for those with NMDs, offers psychological and social support, provides equipment and infrastructure to ease everyday routines, and raises public awareness through educational programs and events.<\/p>\n

    Research conducted by the organization found that following loss of ambulation, the impact of the conditions on sexuality and sex life is what troubles NMD patients the most. As improvements in care are enabling people with NMDs, and Duchenne in particular, to live longer, the importance of intimate relationships increases, but for many this feels unattainable. With the help of the STRIVE grant, MDA Hellas will produce and premiere a short film which focuses on sexuality and sex life with Duchenne. The film will be accessible to the global Duchenne community and will offer realistic and much-needed insight into a topic which has long been viewed as taboo.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"MDA\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Neuromuscular Disorders Association of Turkey\/KASDER<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    A diagnosis of Duchenne muscular dystrophy may be accompanied with difficulties such as a limited social life, dependency on home care, and trouble accessing the same opportunities as able-bodied peers. These limitations, alongside the negative effects of the disease, have led to a notable negative impact on the psychological wellbeing of individuals with Duchenne.<\/p>\n

    Having first won the STRIVE grant in 2018, the Neuromuscular Disorders Association of Turkey (KASDER) set up an online psychological support system for Turkish-speaking individuals with Duchenne around the world. Since then, more than 500 support sessions have been run for 47 Duchenne patients and their relatives. Now KASDER plans to expand their offering to provide 50 people with weekly access to the service, conduct more than 1500 sessions annually, and train an additional 30 psychologists on how to best support individuals with Duchenne.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Neuromuscular\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \n\t

    \n\t<\/span>\n\t2021 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Associac\u0327a\u0303o Gau\u0301cha de Distrofia Muscular (AGADIM) – Brazil<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Founded in 1986 by parents and caregivers, Associac\u0327a\u0303o Gau\u0301cha de Distrofia Muscular\u2019s (AGADIM) mission is to advocate for high-quality care for those living with Duchenne, foster independence and freedom whilst promoting patient wellbeing.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Associac\u0327a\u0303o\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Associac\u0327a\u0303o Sul Catarinense de Amigos e Familiares de Portadores de Distrofias Musculares Progressivas (ASCADIM) – Brazil<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    ASCADIM (Associac\u0327a\u0303o Sul Catarinense de Familiares, Amigos e Portadores de Distrofias Musculares Progressivas) provides physical, psychological, and social care to people with muscular dystrophies in South Brazil. Through ASCADIM, those living with conditions like Duchenne can access free physical therapy, a crucial disease management service. ASCADIM is the only institution to provide this type of care in the region.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"ASCADIM\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Pathfinders Neuromuscular Alliance – United Kingdom<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Pathfinders Neuromuscular Alliance is a unique UK-based user-led non-profit that provides information, advice, and peer support to teenagers and adults with muscle-weakening conditions such as Duchenne. Pathfinders\u2019 mission is to improve access to healthcare, remove disabling social barriers and ensure that adults living with these conditions can live the lives they choose.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Pathfinders\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \n\t

    \n\t<\/span>\n\t2020 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Cure Rare Disease – United States (Student Education and Life Science Immersion Program)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Cure Rare Disease, a patient organization based in Boston, U.S., recognizes the importance of exposing children at an early age to rare diseases and believes that by normalizing conversations about Duchenne in school settings, a greater sense of empathy and understanding between students is fostered. In turn, this helps individuals to become more cognizant of the unique emotional and social challenges their peers with Duchenne may be experiencing.<\/p>\n

    Cure Rare Disease have been using the funding from their 2020 STRIVE Award to run a student education and life science immersion program.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Cure\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Association of Public Organizations of Parents of Children with Disabilities – Russia (Not Alone)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    The Association of Public Organizations of Parents of Children with Disabilities, otherwise known as GAAORDI, is a network of 23 unique patient organizations in Russia, each of whom supports children with disabilities and their carers. The network includes the Sirius Foundation, which specifically supports the parents of children with neuromuscular diseases, such as Duchenne.<\/p>\n

    Winning the STRIVE Award has enabled GAOORDI to work in collaboration with the Sirius Foundation to deliver a comprehensive program, called \u2018Not Alone,\u2019 to Duchenne patients and their carers in the St Petersburg region of Russia.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"The\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Healing Goodwill Foundation – Duchenne Hungary (You Are Not Alone Events)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    The Healing Goodwill Foundation \u2013 Duchenne Hungary, established in 2002, recognizes that patients and their carers are often keen to speak to professionals with the right expertise and knowledge, but don\u2019t know where to turn. The Foundation acknowledges the importance of establishing a safe space where families can connect, share common experiences and draw support and strength from each other.<\/p>\n

    Funding from the 2020 STRIVE Award has been critical in enabling the Foundation to host a YANA away day as well as supporting their community throughout the pandemic with an array of online activities.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Healing\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Asociaci\u00f3n Distrofia Muscular – Argentina (Online Platform to Foster Relationships)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    For over 30 years, the Asociaci\u00f3n Distrofia Muscular (ADM) has aimed to improve the quality of life for Duchenne patients in Argentina. With funding from the STRIVE Award, ADM will develop an online platform for the Argentinian neuromuscular diseases community, particularly those with Duchenne and Becker muscular dystrophy. By building a platform that can be easily accessed though both a website and app, patients, families and health care providers can turn to the online community for support, advice, information and guidance.<\/p>\n

    The primary objective of the online platform will be to promote and foster relationships between those impacted by Duchenne.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Asociaci\u00f3n\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \n\t

    \n\t<\/span>\n\t2019 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Mucopolysaccharidosis Association of Rio Grande do Norte – Brazil (Music Therapy)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Music therapy can be a rehabilitative tool to promote emotional wellbeing in patients in many ways, such as boosting creativity, reducing loneliness and being a source of happiness. In patients with Duchenne, music therapy can also have physical benefits; it can provide a friendly and relaxed environment for patients to develop their motor skills and support improvements in speech.<\/p>\n

    The Mucopolysaccharidosis Association of Rio Grande do Norte (AMPS\/RN) was established in Brazil in 2010 with the purpose of supporting patients with rare diseases. After receiving the STRIVE award in 2019, AMPS\/RN has used the grant to support a professional in developing a range of music-based activities for patients with Duchenne, who are being treated at the Onofre Lopes University Hospital, Natal, Brazil.<\/p>\n

    Specifically, AMPS\/RN held several meetings where Duchenne patients had the opportunity to share their likes and dislikes, enabling the professionals to help them find the musical instrument most suited to their needs. With music classes having now begun, patients, families and AMPS\/RN alike are all looking forward to a musical year ahead.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Mucopolysaccharidosis\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Little Steps – Israel (Website Design Course for Patient Independence)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    For patients with Duchenne, mobility becomes progressively limited over time. This can result in patients feeling isolated, as they spend a great deal of time at home and feel unable to participate in everyday tasks like going to work, which has a negative impact on their social and emotional wellbeing. Little Steps, a charity established in 2010 in Israel, wanted to address the desire of many adult Duchenne patients to progress with their education, establish a career, and gain the life skills that often come with employment.<\/p>\n

    With the STRIVE Award grant in 2019, Little Steps was able to pilot a website design training program for Duchenne patients and launch a campaign to raise awareness about the project in order to attract potential employers. At the end of last year, three Duchenne students enrolled in the program, where they received web design training that was tailored to their individual learning capabilities and skills. The pilot program was a success, with one student having completed the full course already and now on an internship scheme developing a website for a client.<\/p>\n

    In addition to the training course for adults, Little Steps noticed a growing interest in the course from teenage Duchenne patients. By offering the program to younger students, they are able to gain hands-on experience early, and this experience is pivotal in helping them to identify specific areas of web design interest and begin specializing in this very broad industry. Little Steps began running a remote website course for younger students in November 2019, with three teenagers currently participating. The remote classes allow multiple students to join the same lesson, providing the added benefit of greater social interaction with peers.<\/p>\n

    With ongoing outreach with Duchenne families in Israel and advertisement of the training course planned for March this year, Little Steps is confident that they can continue to support Duchenne patients in Israel in planning for their future.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Little\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Muscular Dystrophy Association Macedonia (Together for a Better World for Duchenne Families)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    With funding from the STRIVE Award, Muscular Dystrophy Association Macedonia (MDAM) was able to host their first knowledge exchange seminar in the city of Strumica in October 2019. The seminar focussed on therapeutic techniques, such as hydrotherapy, family-orientated talks, disease education sessions for healthcare professionals, and best practice sharing. Many participants took a basic course in hydrotherapy, and received a physiotherapist training certificate.<\/p>\n

    A total of ten Duchenne families attended the seminar, which provided a platform to share their experiences and learnings with each other. Evening entertainment also provided much-needed respite, giving families an opportunity to relax and get to know each other.<\/p>\n

    Families and healthcare professionals based in Macedonia, as well as Duchenne communities in the neighbouring countries of Serbia, Slovenia and Bulgaria also attended.<\/p>\n

    After a positive and impactful 2019, MDAM has been busy planning a series of activities for 2020, including the development of a website, which is expected to go live soon, and the translation of a global Duchenne family guide into Macedonian, also planned for later in the year.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Muscular\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Enlace – Mexico (Innovative Treatment of Duchenne and Becker Patients in Northern Mexico)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Specialized medical care for patients with Duchenne and Becker muscular dystrophies is very limited in Northern Mexico. Even families who can afford treatment in public or private hospitals struggle to find comprehensive healthcare facilities with the expertise and specialized care required for patients with Duchenne and Becker.<\/p>\n

    ENLACE Distrofia Muscular Duchenne Becker was set up 20 years ago and is still the only organization in the northern states of Chihuahua and Nuevo Leon providing specialized medical care and emotional support to patients with Duchenne and Becker.<\/p>\n

    Funding from the STRIVE Award in 2019 has enabled ENLACE to purchase specialized equipment that they had not previously been able to afford, including diagnostic and monitoring equipment such as Holter recorders, a spirometer and a polysomnography machine. The equipment has given ENLACE the ability to support patients in the region, providing them with the multidisciplinary care they and their families require.<\/p>\n

    As a result of the funding, ENLACE has also been able to continue offering free medical consultations to patients and their families, with specialists in cardiology, neurology and pulmonology. An incredible 94 consultations took place from October to December 2019. ENLACE\u2019s work in Northern Mexico, along with their experience and expertise, has resulted in the organization being asked to replicate their model of care in other Mexican states and be considered as a treatment centre for clinical trial studies.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"ENLACE\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Duchenne Parent Project – Spain (First Impact) <\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    With no other support system like it in Spain, Duchenne Parent Project Spain (DPPE) offers First Impact, an innovative information service to newly diagnosed Duchenne families. The service provides support to patients and families through the emotional journey of accepting and understanding their child\u2019s diagnosis with a life shortening and degenerative disease.<\/p>\n

    First Impact provides information tools about Duchenne, as well as emotional and social support to help newly diagnosed families cope with the common emotions of anxiety, uncertainty and hopelessness.<\/p>\n

    With the STRIVE Awards grant in 2019, DPPE has helped to pay for two new healthcare professionals, a psychologist and social worker. The addition of a psychologist means DPPE is now able to provide families with emotional support. The support of a social worker means patients can now be guided through Spain\u2019s social care system, with advice on how to apply for government grants and assistance.<\/p>\n

    The feedback from the Duchenne community in Spain has been overwhelmingly positive. One family, who recently received the diagnosis that their 5-year old son has Duchenne, was referred to DPPE by their doctor. DPPE was instrumental in helping the family \u2018not feel so alone in the sea of doctors, physiotherapists, clinical trials or social aids\u2019. DPPE offered holistic social, emotional and practical support the family needed. In addition to providing counseling services and Duchenne community contacts, DPPE also provided the family practical advice on how to access their sons\u2019 medical records and check eligibility for clinical trials. By guiding this family, and many others like them, with steps they can take to support themselves and their newly diagnosed child, families are able to adjust to their new reality.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Duchenne\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Mitchell's Journey – United States (Hope Kits)<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    Mitchell\u2019s Journey recognized a lack of available support tools to help guide patients and families in managing the emotional and social consequences associated with receiving a Duchenne diagnosis. As a result, Mitchell\u2019s Journey made it their mission to inspire and empower families by equipping them with tools and resources to cope with the emotional and social challenges associated with Duchenne.<\/p>\n

    With this in mind, Mitchell\u2019s Journey began developing \u2018Hope Kits\u2019, a package containing a number of materials such as a collection of photo essays on hope, a guided journal and interviews with experts on coping with difficult emotions.<\/p>\n

    Mitchell\u2019s journey has been working closely with the Duchenne community on the prototype over the last six months. Many of the families who have received these prototypes have reported that they are relieved to learn that others experience the same emotions after receiving a Duchenne diagnosis. With the content now finalized, the community is keenly awaiting the final Hope Kits becoming available later this year.<\/p>\n

    Funding from the 2019 STRIVE Award has been vital in assisting Mitchell\u2019s Journey in completing and manufacturing their Hope Kits. In particular, the funding from STRIVE is helping Mitchell\u2019s Journey develop a podcast series featuring interviews with wellness experts and discussions with families who have shown endless courage in the face of adversity and grief. This podcast series will be published later this year.<\/p>\n

    The Hope Kits initiative is a beacon of hope for families affected by Duchenne, providing an invaluable resource that they can use to support themselves in recognising their feelings as normal, and developing suitable coping strategies to ensure they don\u2019t feel that they are alone.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Mitchell\u2019s\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \n\t

    \n\t<\/span>\n\t2018 Recipients<\/span>\n\t<\/span>\n<\/h3>\n<\/div>\n\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Muscular Dystrophy Association (ADM) Of Argentina | Argentina<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    In Argentina, the social and economic crisis of 2002 resulted in a continued struggle for access to specialized medical care in the country. This was especially prominent in the interior regions where limited financial resources or the inability to travel made it difficult for patients to reach specialist centers to receive the care and treatment they need, including the 1,100 patients suffering with Duchenne muscular dystrophy.<\/p>\n

    To try to tackle this issue, the Muscular Dystrophy Association (ADM) of Argentina set up the \u2018Programa de Atencion Extramuros (PAEM)\u2019 \u2013 or extramural care program \u2013 in 2002 to give support and counsel to those affected by Duchenne, deliver specialized care at local health centers, and provide training initiatives for healthcare professionals. Specifically, the program aims to reach those patients and families in the interior of the country with limited financial recourses and\/or access to specialist care. The PAEM program works with local Duchenne clinical experts who champion the program at each site, and local patient organizations who provide practical assistance to the families.<\/p>\n

    Receiving funding from the 2018 STRIVE Award has enabled the association to increase the number of training seminars for healthcare professionals and the number of workshops for Duchenne families to attend across Argentina. Most notably, the STRIVE Award has been pivotal to the growth of the PAEM program, with two new centers in the northeast of the country, Misiones and Corrientes, joining the program this year.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

    \n\t\t\t\"Muscular\t\t\t<\/div>\n\t\t\n\t<\/div>\n<\/div>\n\n\n
    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Association Of Family Members And Friends Of Sufferers Of Neuromucular Diseases Brazil | Brazil<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    The Association of Family Members and Friends of Sufferers of Neuromuscular Diseases in Brazil aims to address the unmet treatment needs of patients located within the rural interior of Brazil. The lack of information on locally available care in these districts means that many patients and families are having to travel to the state capital to request treatment and assistance. This has led to overcrowding in these centers, delays in treatment and a further stressful experience for the families.<\/p>\n

    With the funding from the STRIVE Award last year, the organization has begun planning for their project, \u2018InterAction DNM-PE\u2019. The project will see the dissemination of information to boys with Duchenne, their family members and healthcare professionals via a program of educational talks across five rural cities. Delivered as a series of one-day events, the talks will provide training and support on the full-time care of Duchenne patients.<\/p>\n

    The talks are set to begin in March and will continue once a month until August. The first one will take place in Caruaru, Pernambuco, with further events set to take place in Petrolina, Salgueiro and Arcoverde. Topics will include respiratory management, diagnosis and cardiac rehabilitation, occupational therapy and social inclusion.<\/p>\n<\/div>\n\t\t\t\n\t\t\t\t\t<\/div>\n\n\t\t\n\t<\/div>\n<\/div>\n\n\n

    \n<\/div>\n\n\n
    \t
    \n\t\t
    \n\t\t\t\n\t\t\t\t\t\t\t

    Muscular Dystrophy Canada | Canada<\/h3>\n\t\t\t\n\t\t\t\t\t\t\t

    The Personal Empowerment Program (PEP) was established by Muscular Dystrophy Canada to identify specific areas of support that would make a significant difference to the quality of life of clients impacted by neuromuscular disorders. The program offers a personalized and collaborative approach to over 1,000 registered individuals with Duchenne muscular dystrophy in Canada.<\/p>\n

    The PEP provides patients with better access to personalized care and support, while developing an understanding of self-advocacy and access to resources within their communities. Muscular Dystrophy Canada currently works in partnership with twenty-four pediatric and adult neuromuscular clinics, offering access to a network of clinicians, healthcare professionals and researchers that are experts in neuromuscular disorders.<\/p>\n

    The funding from winning the STRIVE Award last year enabled Muscular Dystrophy Canada to extend their outreach throughout the Duchenne community, deliver services that meet specific needs of the community, and deliver across three key areas:<\/p>\n