NORD Senior Director of Policy & Regulatory Affairs, Karin Hoelzer, was featured in the latest issue of #LGMD News, a fantastic resource by the Speak Foundation for the Limb Girdle #MuscularDystrophy community. Read her feature on pages 24-27 and consider subscribing to the magazine! https://lnkd.in/dwW3T2Xe #LimbGirdleMuscularDystrophy #PRV #PRVs
Speak Foundation
非营利组织管理
Columbus，Georgia Area 99 位关注者
The Voice for Limb Girdle Muscular Dystrophy
关于我们
Connecting our lives, sharing our hopes, and finding our purpose. The Speak Foundation is for anyone dealing with a physical disability. The Speak Foundation is the first nonprofit where individuals with neuromuscular diseases serve individuals with neuromuscular diseases. Speak Foundation is unique in that the organization is plugged into the crucial needs of those with physical disabilities as the group is run and staffed by all volunteers or family dealing directly with physical disabilities or neuromuscular diseases. The largest event we hold all year is our annual conference for people with neuromuscular diseases and other illnesses or disabilities. We recently held our 8th annual conference this summer. This is a national retreat focused on bringing together people who can relate and understand each other’s challenges. Each year, we provide a context for socializing, share helpful resources, and aim to bring in speakers and highlight topics that the NMD community has expressed are most relevant and important to them. We welcome people of all ages, along with their loves ones, caregivers, etc. We hope you can join us this summer in Atlanta, GA! Members of our community also hold regional meet-ups throughout the year. Please contact us if you're interested in holding one!
- 网站
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https://thespeakfoundation.com/
Speak Foundation的外部链接
- 所属行业
- 非营利组织管理
- 规模
- 2-10 人
- 总部
- Columbus，Georgia Area
- 类型
- 自有
- 创立
- 2008
- 领域
- drug prevention、drug education、upport groups、drug curriculum、Books, DVD's、Drug Prevention Videos和Resource Center
地点
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主要
获取路线
Columbus
US，Georgia Area，Columbus，31901
Speak Foundation员工
动态
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Here we are at LGMD Day on the Hill which is today! We are excited and our LGMD partners are all here to represent our collective voice. Thank you to all our chosen patient delegates who are sharing your stories today. Your voice is the most important one in the room. Thank you to all our LGMD organizations who are with us! #lgmd #speakfoundation
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Our Fall issue of LGMD News is arriving in mailboxes over the next couple of days! Also watch for the digital copy on the Speak Foundation website as well as via email if you are a subscriber. Not yet subscribed? Don't miss another issue! Sign up to receive this incredible, FREE resource at https://lnkd.in/eXrWc5tW You'll be glad you did! (All subscribers receive a digital copy of our issue and US subscribers receive a hard copy to their mailbox). As always, LGMD News includes educational resources on gene therapy and this issue highlights progress towards therapy development for several forms of LGMD. It also features several articles focusing on advocacy efforts in our community, such as LGMD Day on the Hill, the renewal of Rare Pediatric Disease Priority Review Vouchers, and a call to remove age limits from this incentive program. We learn about the work being done by Atamyo Therapeutics and by Muscular Dystrophy UK, and hear the story of a patient living with an ultra-rare subtype, LGMD R14/2N (POMT2-related). We are thrilled to hear from Dr. Peter Kang of the University of Minnesota about his lab’s work to help resolve genetic diagnoses. Lastly, Joshua Thayer of the Jain Foundation helps us to understand natural history studies. Remember that our next International LGMD Conference is on July 18-21, 2025! We hope that you will join us in Orlando, Florida. To learn more about this important event or to register and book your room, visit https://lnkd.in/e4BTtivb
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LGMD News Magazine, a publication of the Speak Foundation, wants to highlight the inadequate structure for personal care services currently in the USA. We would like to hear your personal stories from our community regarding the lack of resources from medicaid or medicare to provide at home help. As we progress in our LGMD, we find ourselves needing help with daily tasks as bathing, dressing, toileting, etc. What gaps do you see in the systems in the USA for these personal care services? Are you still working and need assistance with personal care but find that you are ineligible? In a future issue of the magazine, we will be raising this advocacy issue so that we can begin to raise awareness!!! We will select three of your stories to be published in LGMD News Magazine. If you would like to be considered as a potential author, please send an email expressing your interest to [email protected] by September 15th, 2024. We would like to hear all facets on the state of personal care services in the USA. In future issues, we will also share the state of caregiving in countries throughout the world. Thank you!
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We are so excited about our new campaign to locate individuals living with LGMD and other mutations that have patterns of weakness resembling LGMD. Find out about the cutting edge research for your form in LGMD News Magazine by signing up for our LGMD Patient Network! How many people are living with LGMD in the world? It is so many more than has been reported. Due to the new forms being discovered and the techniques of genome sequencing, we are realizing that LGMD is a very large patient community. Join our international LGMD patient network now at https://lnkd.in/eXrWc5tW. Receive a free copy of LGMD News Magazine. It is distributed throughout the world. With translations in Spanish and in French, we are able to reach people everywhere with our digital distribution. Sign up today!
The Speak Foundation
thespeakfoundation.com
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LGMD News magazine is published quarterly by the Speak Foundation. ?? This free magazine is dedicated to bringing the LGMD community the most recent and relevant information, research, and stories about limb-girdle muscular dystrophy. The magazine is an invaluable resource for patients, families, and caregivers. ? To learn more and to subscribe, visit https://lnkd.in/dwW3T2Xe #LGMDawareness #TogetherWeAreStronger
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On behalf of the Inaugural European LGMD2I/R9 Conference Planning Team, Kathryn Bryant (Speak Foundation) and I had the distinct pleasure of awarding our esteemed neurologist, Dr. katherine mathews, this award in recognition of her exemplary work in support of the LGMD2I/R9 patient community. https://lnkd.in/eeiJFS27
EU LGMD2I R9 Conference
https://vimeo.com/
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Thank you to Global Genes for the nomination as a Rare Champion in Advocacy. Together we make a difference and I am honored to be among so many amazing individuals who were also nominated for this award! As I say to everyone, the difference we make is in our ability to bring others to the table with us. We are not alone in our struggle; we are not alone in our fight either. https://globalgenes.org/
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If you know Dr Jerry Mendell, you know someone who is quite remarkable and you are very blessed. He has truly changed lives for so many patients living with muscular dystrophy. I am so utterly grateful for this man who made a difference for so many. https://lnkd.in/gfyce26k
Jerry Mendell
time.com