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What's your best tweet?
Interesting statement from Eric Law—the ultimate goal is to make your organization obsolete, solve the problem, eliminate the need. #cncn
Share on TwitterWhat are six things you could never do without?
Fellow patients; the social media to stay in touch with them; high-speed wi-fi; imagination; perseverance; moxie.
How do you use Twitter in your professional life?
FMD Chat's founder also is managing editor of a magazine and uses Twitter to publicize content & what she's doing in the region.
What's your favorite Twitter app?
TweetDeck
Twitter or Facebook?
Twitter for new ideas; Facebook for staying in touch.
What was the funniest trend you've seen?
The medical community doesn't lend itself to funny trends; however, creative faux disease names are entertaining—JustinFeveritis.
What feature should Twitter add?
A more geographical sorting option would be useful to find users in the immediate area; also periodically expunging inactive accounts.
Who do you wish had a Twitter feed but doesn't?
Medical providers—especially those in rural communities who have a lot to gain from the global network
What are some words or phrases you refuse to shorten for brevity?
fibromuscular dysplasia (which can be FMD, but FMD has a different connotation!); stroke; aneurysm; death; rare disease
Is there someone you want to follow you who doesn't already? If so, who?
Hillary Clinton and Michele Obama
Have you ever unfollowed someone? Who and why?
Yes—typically due to inactive accounts or too little substance.
Why should we vote for you?
FMD Chat is a labor of love—there are no salaries, there are no set hours. FMD Chat exists because it must. Patients need representation.
Terms you wish would start trending on Twitter right now?
fibromuscular dysplasia, rare disease; medical research funding; clinical trials; surrogate endpoints; Rare Disease Day; ePatient
What's the most interesting connection you've made through Twitter?
@LarryChu made FMD Chat's founder aware of a medical conference at Stanford, opening a world of possibilities for healthcare & social media.
Hashtag you created that you wish everyone used?
#FMDaware
How do you make your tweets unique?
FMD Chat is dedicate to spreading awareness of the rare disease fibromuscular dysplasia among patients and providers.
What inspires you to tweet?
FMD Chat's mission is too important for us not to succeed. Each tiny Tweet of awareness makes a difference.
Ever get called out for tweeting too much?
Never. The problem with fibromuscular dysplasia is that there is so little known about it.
140 characters of advice for a new user?
Follow people you admire; follow the people those people follow. Read and learn before tweeting. Develop your own voice. Be gracious.
How long can you go without a tweet?
The point of Twitter is using daily—it's not a blog. If FMD Chat has a shortage of content of our own, we look to RT relevant info.
What question are we not asking here that we should?
What have your Tweets and other social media efforts accomplished?
How do you imagine Twitter changing?
Twitter has great potential to provide real time customer service and emergency management.
Who do you admire most for his or her use of Twitter?
Dana M. Lewis who created the #hcsm chat on Sunday nights. Patients and providers gather to discuss healthcare. It's powerful stuff.
Who is the funniest person on Twitter that you follow?
Steven Colbert
What is one of the biggest misconceptions of Twitter?
Twitter doesn't have to be vapid. It gives as much as you put in and responds to curation.
Why should people follow you?
Follow FMD Chat to learn—learn about FMD, learn about health, learn about what it means to be a patient w/ no treatment & no cure.
Can you name some one-of-a-kind Twitter accounts that you follow?
@BoraZ, @MedStartr
How do you decide what to tweet?
Our Tweet stream is linked to our FB page so as to double the reach of shared content; also we participate in medically relevant TweetChats.
How do you use social media to motivate yourself or others to live a healthier life?
FMD is often misdiagnosed for years. FMD Chat aims to improve knowledge to lead to early diagnosis & support those affected by the disease.
How has social media helped bring your family closer together and #keepgoodgoing?
Social media led to the creation of FMD Chat. FMD Chat involves patients, family, friends, and healthcare providers in order to succeed.
Why'd you start tweeting?
Twitter is a fast and effective way to reach a global audience and gain knowledge from contacts it's impossible to meet in person.
Has Twitter changed your life? If yes, how?
Yes. Twitter led FMD Chat's founder to her first medical conference at Stanford which led to the creation of FMD Chat.
What do you wish people would do more of on Twitter?
Dialogue is possible vs. simply putting out 140 character bursts. Converse. Learn. Share one another's content.
How will the world change in the next year?
Worlds can be as big or as small as one wants to make them—in the FMD Chat world, we will award our first travel scholarship to a patient.
What are some big Twitter faux pas?
Tweets can spread like wildfire—always be truthful, give credit where credit is due, and remember to thank people for their help.
What will the world be like 10 years from now?
I worry that 10 years from now I won't be alive because of the progressive nature of FMD & lack of treatments. We must change healthcare.
Most recent nominations for FMD Chat
Kari Ulrich
@FMDGirl
I nominate @FMDChat for a Shorty Award in #activism because...They are leaders in patient support #raredisease
Afternoon Napper
@AfternoonNapper
Help @FMDChat promote #raredisease awareness by nominating the organization for a Shorty Award! #FMD #hcsm
FMDAdvocate
@FMDAdvocate
Sarah E. Kucharski
@SML_Kucharski
Amanda Singletary
@SML_Singletary
Scott Strange
@Strangely_T1
I nominate @FMDChat for a Shorty Award in #activism because Rare Diseases do not get the attention/resources needed http://shortyaward...
