Discover Top Posts Tagged with #fshd

Shout out to folks with Facioscapulohumeral Muscular Dystrophy!

#Facioscapulohumeral muscular dystrophy #FSHD #muscular dystrophy #disability #shout out

Aligna

A Wearable Assistive Device for Adolescents and Young Adults living with Facioscapulohumeral Muscular Dystrophy.

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

Learn how having a disability can actually act as a catalyst for creative problem solving.

New blog w adidas read plz

#lgmd #fshd #adidas #obstacles #wesleyhamilton

here’s part 1 of another project w adidas spotlighting differently abled / chronically ill entertainers, creatives, athletes, and more

https://www.gameplan-a.com/2019/10/how-disability-and-adversity-can-bring-unexpected-positives/?section=main

#Muscular Dystrophy Awareness #spina bifida #FSHD #cleveland cavaliers #adidas

CBD and medical marijuana for FSH muscular dystrophy From the FSHD Society's September 2019 webinar. With the spread of legalized medical marijuana and the passage of the 2018 Farm Bill that made CBD legal in all 50 states, it’s a bit of the Wild West out there for individuals seeking relief from chronic pain, inflammation, anxiety, and a host of other symptoms that have been reported to be alleviated by CBD.

#cannabidiol #CBD #FSHD #muscular dystrophy

today is FSHMD awareness day!

fsh (facioscapulohumeral) muscular dystrophy is an inherited neuromuscular disease that causes progressive weakness in the face, shoulders and arms. some fshmd patients (including me) also have pain and weakness in their torso and legs. in rare cases fshmd can cause hearing loss, vision loss, respiratory issues and cardiac issues. 20% of fshmd patients use wheelchairs or electronic mobility devices. (you can read more symptoms here)

today (june 20) is world fshmd day. you can support the fshmd society or learn ways to raise awareness here!

#literally writing this at 10:30 pm bc i forgot #fsh #fshd #fshmd #facioscapulohumeral muscular dystrophy #fsh muscular dystrophy #muscular dystrophy #disability #disabled #awareness #neuromuscular disorder #actually tourettic #this is why i use a cane btw

#fall2018 #youlooksobeautiful #facesoffshd #fshdselfies #fshd #fshstories #fshsociety https://www.instagram.com/p/Bpc1xJ7lHS_/?utm_source=ig_tumblr_share&igshid=jbevsuucxjk

#fall2018 #youlooksobeautiful #facesoffshd #fshdselfies #fshd #fshstories #fshsociety