Thank you to our friends at Muscular Dystrophy Association for your endless work for those living with neuromuscular diseases. Today was #LouGehrigDay - a day where baseball stadiums and parks across the country, celebrated the life of legendary baseball legend Lou Gehrig, and his battle with ALS. It’s a day to remember not just Gehrig’s baseball achievements but to spotlight ALS, the challenge he bravely faced. #ENDALS #MDA #musculardystrophy #musculardystrophyawareness #genetics #lgmd #limbgirdlemusculardystrophy #lgmd2c #raredisease #ultrararedisease #genetherapy #icebucketchallenge Michael J. Kennedy, MBA Nora Capocci, MPH
The Dion Foundation
非盈利组织
Boston ，Massachusetts 147 位关注者
Help support research to expedite the development of treatments for rare and ultra-rare childhood diseases.
关于我们
Support research. Find a cure. Help children and families fight rare diseases. Our mission at the Dion Children Foundation for Rare Disease is to increase awareness of rare and ultra-rare genetic diseases such as Limb-Girdle Muscular Dystrophy, that affect children with the intention of allocating funds for research and development of potential treatments and cures of these devastating diseases. Our belief at Dion Children Fund is that no child should be left behind. Our children matter, and so do the lives of so many other children affected by rare genetic diseases. No child left behind.
- 网站
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www.thedionfund.org
The Dion Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 1 人
- 总部
- Boston ，Massachusetts
- 类型
- 非营利机构
- 创立
- 2023
地点
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主要
获取路线
US，Massachusetts ，Boston
The Dion Foundation员工
动态
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Today, we join the world in celebrating "Rare Disease Day" which takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. ?? All forms of Limb-Girdle Muscular Dystrophy (LGMD) are classified as a rare disease! A rare disease, also called an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share many common struggles. ?? Rare Disease Day 2024 is an opportunity to be part of a global call on policymakers, healthcare professionals, and services to better coordinate all aspects of care for rare disease patients and families. Researchers also need patients and rely upon their participation to ensure that research is meaningful. Rare disease research is not done for the sake of creating knowledge; the knowledge generated is only useful if it is translated into real benefits for patients. ?? Today is a great day to begin increasing awareness of LGMD! Remember, by telling YOUR story and sharing YOUR experiences, you help others understand what it is like to live with LGMD. #RareDiseaseDay #LgmdAwareness #CureLGMD #TogetherWeAreStronger
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