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K
7 几个月前

The resources and support provided by this organiz...

The resources and support provided by this organization have been invaluable in helping my family navigate the challenges of living with dystonia. The website offers comprehensive information on the condition, treatment options, and coping strategies, making it a trusted source for anyone seeking reliable information. Additionally, the foundation's commitment to funding research and raising awareness about dystonia is truly commendable. The virtual events and support groups facilitated by the organization have connected us with others going through similar experiences, fostering a sense of community and understanding. The dedication and passion of the team behind this foundation are evident in the impactful work they do. Thank you for all that you do.

B
8 几个月前

I stumbled upon this organization while searching ...

I stumbled upon this organization while searching for information on dystonia. I have found their website to be incredibly informative and helpful. The resources they provide are extensive and have been a great help in understanding my condition better. I really appreciate the effort they put into creating and maintaining such a valuable resource for those affected by dystonia. Thank you!

L
1年以前

I'm impressed with the Dystonia Medical Research F...

I'm impressed with the Dystonia Medical Research Foundation's commitment to raising awareness and supporting research on dystonia. Their website is a wealth of information, providing helpful resources for patients and their families. I appreciate the efforts they put into making the information accessible and easy to understand. Thank you!

R
1年以前

I have been struggling with dystonia for a few yea...

I have been struggling with dystonia for a few years now, and I am so grateful to have found the Dystonia Medical Research Foundation. Their website has been a lifesaver for me, providing me with valuable information and resources that have really helped me cope with my condition. I can't recommend them enough.

D
1年以前

I recently discovered the Dystonia Medical Researc...

I recently discovered the Dystonia Medical Research Foundation and I'm so glad I did. Their website has been a tremendous help in understanding dystonia and finding resources for support. The foundation is doing amazing work in advancing research and raising awareness. Thank you for the valuable information and support you provide.

W
1年以前

🙌 I am incredibly grateful for the Dystonia Medica...

🙌 I am incredibly grateful for the Dystonia Medical Research Foundation's work in raising awareness and funding for dystonia research. Their website has been a valuable resource in educating myself and others about the condition. The information provided is comprehensive and easy to understand. Thank you for all the support you provide to patients like me! 💙

A
1年以前

I had a great experience with the Dystonia Medical...

I had a great experience with the Dystonia Medical Research Foundation. Their website is very informative and easy to navigate. I was able to find the information I needed quickly and efficiently. The resources they provide are top-notch and have been a great help. The staff is also very friendly and knowledgeable. Overall, I highly recommend the foundation for anyone looking for information and support related to dystonia.

M
1年以前

👏 The Dystonia Medical Research Foundation is maki...

👏 The Dystonia Medical Research Foundation is making a significant impact in the field of dystonia. Their website is a goldmine of resources and information for patients and caregivers. I really appreciate the efforts they put into providing reliable information and support to the dystonia community. Keep up the great work! 🌟

J
1年以前

👍 The Dystonia Medical Research Foundation is doin...

👍 The Dystonia Medical Research Foundation is doing a fantastic job in raising awareness and funding for research on dystonia. I've been following their work for a while and they have made impressive progress in advancing our understanding of the condition. They provide great resources and support for patients and their families. Keep up the excellent work! 👏

关于Dystonia medical research foundation

肌张力障碍医学研究基金会:推进肌张力障碍研究以治愈

肌张力障碍是一种影响全世界数百万人的神经运动障碍。它会引起不自主的肌肉收缩,从而导致扭曲和重复运动或异常姿势。这种情况会影响身体的任何部位,包括颈部、面部、眼睛、四肢和躯干。肌张力障碍可能会导致疼痛和致残,使患者难以进行日常活动,如行走、写作或说话。

肌张力障碍医学研究基金会 (DMRF) 是一家非营利组织,致力于推进肌张力障碍研究以寻求更多治疗方法并最终治愈。 DMRF 由 Samuel A. Frankel 和 Sheldon S. Herman 于 1976 年创立,四十多年来一直处于肌张力障碍研究的前沿。

DMRF 的使命有三个:资助旨在了解肌张力障碍的原因和开发新疗法的创新研究项目;提高医疗保健专业人员、政策制定者和公众对肌张力障碍的认识;为肌张力障碍患者及其家人提供支持服务。

研究

DMRF 资助研究肌张力障碍生物学和治疗各个方面的前沿研究项目。该基金会支持旨在揭示导致肌张力障碍运动的遗传或环境因素的基础科学研究。 DMRF 还资助临床试验,以测试旨在缓解症状或减缓疾病进展的新药或设备。

DMRF 资助的研究的一个例子是 Mark Hallett 博士在颈椎肌张力障碍(一种影响颈部肌肉的局灶性肌张力障碍)的深部脑刺激 (DBS) 疗法方面的工作,该疗法在减轻一些反应不佳的患者的症状严重程度方面显示出可喜的结果肉毒杆菌毒素注射等其他治疗就足够了。

意识

DMRF 不懈努力,通过联邦政府官员提高医疗保健专业人员和地方州级政策制定者对肌张力障碍的认识,以便他们能够更好地了解这种复杂疾病对个人生活的影响,同时提倡支持受其影响的人的政策!

该基金会还与世界各地的患者倡导团体合作,他们通过提供教育材料(例如解释不同类型/表现/形式等的已知信息的小册子)来分享其使命,举办网络研讨会,由专家讨论与理解相关的当前趋势/研究结果我们如何最好地治疗/管理这些条件,共同迈向未来的岁月!

支持服务

DMRF 为各种形式/类型/表现/等的患者提供支持服务,包括居住在北美以外的患者,由于缺乏政府/非营利组织的资金/支持或仅仅因为他们可能在当地获得有限的访问/资源不知道除了传统的医疗保健提供者之外还有什么选择!

该基金会提供在线资源,例如论坛,人们可以在论坛上与有类似经历的其他人联系,同时分享技巧/技巧/建议/等,以及有关全球临床试验的信息,以便每个人都了解最新进展/今天明天也正在测试治疗方法!

结论

总之,DMRF 在促进我们对这种衰弱状况的理解,同时努力寻找更有效的治疗/治愈方法方面发挥着重要作用。通过其资助创新科学研究的努力,旨在揭示驱动不同形式/类型/表现等的潜在机制,提高医疗保健专业人员/政策制定者对全球每天受这些疾病影响的个人生活的影响的认识,并提供重要的支持服务直接受益于那些受影响最严重的人自己/家庭/照顾者等,我们希望很快有一天会看到在改善轻度/重度病例等整个范围内的整体生活质量结果方面取得重大进展!

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Dystonia medical research foundation

Dystonia medical research foundation

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