Spread the Joy of the Season with the AMCSI Holiday Card Exchange! ????? It's that wonderful time of year again, & we're thrilled to bring back the AMCSI Holiday Card Exchange! ???????? Here's how you can be a part of this heartwarming tradition: 1?? Sign up online by December 1st 2?? Receive a list of 10 to 20 AMC families who are excited to exchange holiday cards 3?? Send your heartfelt cards to the families on your list 4?? Receive warm wishes & love from your new friends in return! Share the joy, love, & magic of the holidays with AMC Families from all around. ?????? Sign up today & let's make this holiday season one to remember! https://lnkd.in/eyPNqV3i If you have any questions or need assistance, please feel free to reach out to [email protected]. We're here to help & ensure everyone has a wonderful time participating in this festive tradition. ?????? Hashtags #AMCSI #HolidayCardExchange #Arthrogryposis #SpreadTheLove #HolidaySeason #AMCFamilies #CommunityLove #Inclusion #Acceptance #Advocate #Strength #Resilience #Courage
Arthrogryposis Multiplex Congenita Support Inc
非盈利组织
Spartanburg，South Carolina 330 位关注者
Advocating for Arthrogryposis.
关于我们
To provide & encourage more understanding & mutual support among anyone diagnosed with Arthrogryposis Multiplex Congenita (AMC).
- 网站
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https://www.amcsupport.org
Arthrogryposis Multiplex Congenita Support Inc的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Spartanburg，South Carolina
- 类型
- 非营利机构
- 创立
- 2007
- 领域
- Disability、Disability Advocacy和Arthrogryposis Multiplex Congenita
地点
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主要
获取路线
US，South Carolina，Spartanburg，29304
Arthrogryposis Multiplex Congenita Support Inc员工
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Ted Houser
Graphic Production Coordinator | Graphic Designer
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Ani Samargian
Arthrogryposis Multiplex Congenita Support Inc.
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Misha Dream Walker
Founder of the Dream Walker Project | International Ambassador at Arthrogryposis Multiplex Congenita Support Inc. | Building a Community of Support…
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Angelina Fosbinder
Student at Virginia Tech
动态
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Arthrogryposis Multiplex Congenita Support Inc转发了
Close to 60 participants attended the first joint H?pitaux Shriners pour enfants - Canada & Children’s Hospital at London Health Sciences Centre (LHSC) research symposium on November 1st. Principal Investigators and trainees from each Institution learned about exciting, state-of-the-art research taking place at each site. The aim of the symposium was to identify potential areas of research collaboration between our two Institutions. The symposium was also attended by hospital administrators as well as members of our Board of Governors. Amazing science was shared thanks the support of the Mocha Shriners of London.
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Arthrogryposis Multiplex Congenita Support Inc转发了
Founder of the Dream Walker Project | International Ambassador at Arthrogryposis Multiplex Congenita Support Inc. | Building a Community of Support for Arthrogryposis | Join Us in Raising Arthrogryposis Awareness
Just published! Exciting insights into the health-related quality of life (HRQL) in children with Arthrogryposis Multiplex Congenita (AMC), thanks to the dedicated team. As a person with AMC, it’s incredibly heartwarming to see more and more research dedicated to understanding and improving the lives of individuals in our community. This study, led by an incredible team of orthopedic surgeons, doctors, clinical researchers, and rehabilitation specialists, shines a light on the unique physical and social challenges children with AMC face. Key findings show significant struggles with physical mobility and self-care, but also highlight the resilience in social relationships and pain management. It’s also interesting to see that parents often view quality of life differently than we do, reminding us why it’s so important to look at both perspectives. A huge thank you to everyone involved in making this research possible. Each study like this brings us one step closer to a better future for all of us with AMC ???? #Arthrogryposis #AMC #ArthrogryposisResearch
Clinician Scientist at Shriners Hospitals for Children, Associate Professor at McGill University
?????????Off the press! Check out our latest publication on health-related quality of life in children with arthrogryposis. Congrats Shahrzad Nematollahi and our team of orthopedic surgeons, doctors, clinical research coordinators, rehabilitation practitioners, trainees and statistician from eight Shriners Children's and McGill University School of Physical & Occupational Therapy for the first analysis of both self and parent report quality of life and factors associated with better or worse quality of life in arthrogryposis. Thank you Shriners Children's and Fonds de recherche du Québec for funding and supporting this work ! #qualityoflife #arthrogryposis #teamwork https://lnkd.in/evHW9XEd
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????AMC HOLIDAY GRANT APPLICATION IS NOW OPEN!???? A fundraiser that aims to bring joy & relief to AMC families nationwide during the holiday season. Our mission is simple: help AMC families enjoy the holidays without the burden of expenses. Many AMC families face overwhelming challenges, including medical expenses & hospital visits. Your support can make their holiday season one to remember & every contribution goes directly to AMC families within our community & brings us closer to achieving this goal.?? To help our AMC Families this holiday season, please visit https://amcsupport.org To apply for the AMC Holiday Grant, please visit https://lnkd.in/eEvFnrCn ~~~~~~~~~~ If you want to learn ways to create your fundraiser for AMCSI, please visit: https://lnkd.in/eDSGR2c5 ~~~~~~~~~~ Hashtags #AMCHolidayGrant #Holiday #Grant #AMCSI #HolidaySeason #Christmas #Xmas #HelpingFamilies #AMCfamilies #Strength #Resilience #Courage #SupportAMCFamilies #GiveJoyGiveRelief #HolidayHelpForAMC #AMCSupport #DonateForAMC #SpreadHolidayCheer #FundraisingForAMC #HelpAMCFamilies #HolidayGiving #JoyfulHolidaysForAll #AMCFamilySupport #GiveBackThisSeason #HolidayGrant2024 #MakeADifference
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?? Surprise AMC Meetup in NYC! ???? This past Sunday, November 17th, the Big Apple got a little sweeter with an impromptu AMC Mini Meetup! ???? These pop-ups, AMC Mini Meetups, remind us that no matter where we are, the AMC spirit is strong & thriving! ???? Drop a ?? if you love spontaneous meetups, or tag a friend you want to create the next AMC Mini Meetup with! ???? ?? Hashtags #AMCSI #AMCCommunity #ArthrogryposisAwareness #PopUpMeetup #AMCInNYC #Strength #Courage #Resilience #NYC #BigApple #AMCbigApple #AMCstrong #AMCfamily
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?? Stay Connected with AMC Support! ?? ?? Follow us (@amcsupport) on all your favorite platforms: ?? Facebook ?? Instagram ?? Bluesky (Bsky) ?? TikTok ?? YouTube ?? X (formerly Twitter) ?? Join us, show some love, & let’s amplify the #AMCSupport movement together! ?? Hashtags #AMCSI #AMCSupport #Arthrogryposis #DisabilityAwareness #StayConnected #Strength #Resilience #Courage #Facebook #Instagram #BlueSky #TikTok #YouTube #x
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Arthrogryposis Multiplex Congenita Support Inc转发了
Pediatric orthopaedic surgeon specializing in arthrogryposis multiplex congenita and Prader-Willi syndrome
Misha and Michael! We can't wait to hear your stories and share in the pictures of the new friends you meet on your travels. You are a treasure for the AMC community, and we all love how you reach out to spread awareness about AMC and the love!
Founder of the Dream Walker Project | International Ambassador at Arthrogryposis Multiplex Congenita Support Inc. | Building a Community of Support for Arthrogryposis | Join Us in Raising Arthrogryposis Awareness
We’re thrilled to share that so far, we have connected with 30 families in New Zealand and over 100 families in Australia for The Long Road to AMC Awareness Down Under. It’s incredibly heartwarming to see this excitement for connection and support. But, at the same time, it’s a reminder of how deeply our AMC families are seeking for a sense of community. In New Zealand, TAGNZ has done an amazing job with their conferences and support networks, creating a space where families feel understood and valued. However, in Australia, we recognize there’s a gap, there isn’t as much formal support or a community set in place. Over the two and a bit months that we will be there, our aim is to help strengthen the foundation that’s already thriving in New Zealand and, importantly, to bring together the AMC community in Australia. We’re committed to helping bridge these connections, ensuring families feel seen, supported, and part of a larger network that genuinely understands their journey. #Arthrogryposis #ArthrogryposisAwareness
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?This year, we’re shaking things up!? Instead of Giving Tuesday on December 3rd, we’re kicking off GRATEFUL TUESDAY – because there’s so much to be thankful for! From the amazing Doctors, PT/OT Specialists, & Medical Professionals to our incredible Donors, Sponsors, Volunteers, & the AMC Community, YOU are the heart of everything we do. ?? Let’s keep the gratitude flowing & continue supporting the Arthrogryposis Community together.?? Head to (https://amcsupport.org) to donate & make a difference today! (Please share this with family, friends, employers, & companies)?? ?? What are YOU grateful for this Grateful Tuesday? Let us know in the comments! ?? Hashtags #AMCSI #GT #GratefulTuesday #AMCCommunity #AMCSupport #Arthrogryposis #Multiplex #Congenita #Strength #Courage #Doctors #PTspecialists #OTspecialists #MedicalSpecialists #AMCinternationalSupport #AMCinternational #AMCunity #AMClove #AMCwarrior #AMCstrong
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Founder of the Dream Walker Project | International Ambassador at Arthrogryposis Multiplex Congenita Support Inc. | Building a Community of Support for Arthrogryposis | Join Us in Raising Arthrogryposis Awareness
How I Started Raising Awareness for Arthrogryposis, and some suggestions if you would like to do something similar: Years ago, at 28, I made a decision that changed my life, I started sharing my story. Living with arthrogryposis, a condition that affects joint movement, I grew up facing challenges, many of which felt isolating. But as I grew older, I started to think I couldn’t be alone in this journey, There had to be others like me, families affected, and people who simply wanted to understand. So, I took a leap of faith and began sharing openly, hoping to connect, to educate, and to bring a little more light to those navigating this path. What happened next was pure magic! What began as a simple blog evolved into the Dream Walker Project, a mission to reach and support individuals with AMC around the world, one story, one mile, and one connection at a time. Today, I travel, speak, and work to build bridges across continents, helping people living with AMC feel less alone and more understood. And the truth is, raising awareness isn’t always easy, but it’s deeply fulfilling. For anyone interested in starting their own awareness journey, here are a few tips that have helped me along the way: 1. Start with Your Story – Authenticity is powerful. People connect with real experiences. Share your journey—your struggles, your victories, and even your questions. Let people see the human side of what you’re advocating for. 2. Build a Community, Not Just an Audience – Awareness is more than spreading information; it’s about connection. Engage with people. Listen to their stories. The support, understanding, and impact will be stronger when it feels like a shared journey. 3. Educate and Inspire – Share facts, resources, and insights, but also bring hope. Show others the strength within the community you’re representing. Awareness should inspire change, understanding, and sometimes, a little bit of courage. 4. Be Patient, Be Persistent – Awareness doesn’t happen overnight. It’s a marathon, not a sprint. Some days, it will feel like a slow journey, but remember, every person who listens, learns, and supports makes a difference. Arthrogryposis awareness is close to my heart, but no matter what cause you’re passionate about, I believe in the power of stories, connection, and the courage it takes to start. If you’re considering raising awareness for something meaningful to you, know that your voice matters. Together, we can make a difference. #ArthrogryposisAwareness #DreamWalkerProject #Advocacy #DisabilityAwareness #CommunityBuilding
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?? Together Tuesdays ????? Join us as we get caught up with replacing a caretaker, how that process worked out, the dynamics of AMC families, & AMC Life.?? ?? Watch here: https://lnkd.in/ePaZpGEK A pre-recorded, more relaxed, less restrained style! Join us for each new chapter, & tune in whenever it suits you! To join the recordings, please register today at https://lnkd.in/exVE2f9X Hashtags #AMCSI #TogetherTuesdays #Arthrogryposis #Community #Support #AMCFamily #AMCcommunity #Registration #BeeSafe #BeeStrong #WeeklyEvents #EveryTuesday #Arthrogryposis #AMCsupport #Strength #Resilience #Courage #YouTube #AMCtogether #AMCwarrior #AMCstrong #Caretakers #NavigatingIndependentLiving #AMCindependentLiving #Tips #Suggestions
Together Tuesdays - Caretakers pt2, Dynamics of AMC Families, & AMC Life
https://www.youtube.com/