#facioscapulohumeral muscular dystrophy | Explore Tumblr Posts and Blogs

tic-loud-tic-proud · 6 months

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you fundraised over $2,000 for muscular dystrophy research! you don’t know how much that means to me as someone with muscular dystrophy! I wanted to ask, how did you do it? I’d love to fundraise in my own community. Any tips on how to start?

Thank you so much!

I am a member of a fundraising team for my local chapter of the FSHD Society for facioscapulohumeral muscular dystrophy, the type of MD that I have. As far as I know, the FSHD Society only operates in the USA and Canada, but they have a list of some global FSHD groups here.

The FSHD Society does an annual fundraising event called the Walk and Roll to cure FSHD: this is the only major fundraiser specifically for FSHD in North America. This is the primary way that I've raised money in the past.

Anyone can participate, but the best way is to join or create a fundraising team (fundraising teams raise more than 80% of total donations). FSHD is genetic, so the team I'm on consists mostly of my family members and a few friends that also have FSHD, which classes us as a Friends & Family team (as opposed to a corporate team). You need 4 or more people to make a team.

Teams create a website or Facebook group to document their goals and progress. I'm not sure whether or not this is required, but definitely creates a much easier way for people to send in donations online rather than with cash/check.

Then, get the word out! The easiest way to do this is with social media posts that link to your team's webpage, but some teams also put out flyers. And depending on where you work, you could ask your business to be a corporate sponsor, or do a corporate match program, where every dollar donated by an employee is matched by the corporation. Depending on how much you raise you can receive branded items in return: I've gotten an umbrella, backpack, and duffel bag.

If there is no Walk and Roll event near you, you can participate virtually or donate to the FSHD Society at any time through their website.

My team's $2,000 worth of funds raised is actually on the lower end compared to most other teams, who average over $3,000! But remember that every cent counts towards finding a cure for FSHD and helping people living with it :)

#unfortunately i will not link to my teams webpage #because it contains my full name email and phone number #i love you guys but that's a little too personal to share on here #muscular dystrophy #FSHD #fshmd #facioscapulohumeral muscular dystrophy

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cyberhideoutflower · 2 years

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Facioscapulohumeral Muscular Dystrophy (FSHD) Drugs in Development by Stages, Target, MoA, RoA, Molecule Type and Key Players provides an overview of the Facioscapulohumeral Muscular Dystrophy (FSHD) pipeline landscape.

The report provides comprehensive information on the therapeutics under development for Facioscapulohumeral Muscular Dystrophy (FSHD), complete with analysis by Stage of Development, Drug Target, Mechanism of Action (MoA), Route of Administration (RoA) and Molecule Type. The report also covers the descriptive Pharmacological Action of the therapeutics, its complete research and development history and latest news and press releases.

#Facioscapulohumeral Muscular Dystrophy Drugs market

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lifewithaview · 3 months

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Luke Kleintank in The Man in the High Castle (2015)End of the World

S1E8

Juliana and Frank make plans to escape the Pacific States, only to be dragged back into danger by Joe as he tries to retrieve a new film. Meanwhile, Smith's loyalty is put to the ultimate test when confronted with a startling family discovery.

*Landouzy-Dejerine disease, otherwise known as facioscapulohumeral muscular dystrophy, is a hereditary muscles wasting disease, most commonly affecting the face, shoulders, upper arms and lower legs initially. Symptoms usually appear during teenage years. The genetic cause of the disease is yet to be identified.

#The Man in the High Castle #2015 #End of the world #S1E8 #tv series #Luke Kleintank #alternate history #Germans #Japanese #America #Pacific States #film #double age #episode title appears in song #drama #scifi #thriller #forbidden films #just watched

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columbianewsupdates · 3 days

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