Social Fundraising — Epidermolysis Bullosa

Butterfly

 

 

 

 

 

 

 

 

 

 

I absolutely learn something new with every course module of my social media studies. I now know that there are fundraising sites that we can all access and some are completely free! We can use these sites to raise money for whatever cause that may move us or look to these sites to donate money for the same reasons. Here are two that are very easy to access:

https://givver.com/

http://www.fundly.com/

Learning of these types of sites was of particular interest to me because a dear friend had approached me recently asking if somehow I knew of a way to help fundraising, donations, etc. for children with a terrible disease.  Being in public relations for over 10 years, I thought I might be able to help.  My friend champions the cause of trying to raise awareness and funds for the cure of Epidermolysis Bullosa.

Epidermolysis Bullosa was a disease I knew nothing about, yet after some schooling from my friend, who is in the medical profession, I became enlightened to the tragic affliction and learned that worst of all, most of its victims are tiny infants or toddlers.

Epidermolysis Bullosa (ep-ih-dur-MOL-uh-sis buhl-LO-sah) is a group of skin conditions whose hallmark is blistering in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape. Four main types of Epidermolysis bullosa exist, with numerous subtypes. Most are inherited.

Most types of Epidermolysis Bullosa initially affect infants and young children, although some people with mild forms of the condition don’t develop signs and symptoms until adolescence or early adulthood. Mild forms of Epidermolysis Bullosa may improve with age, but severe forms may cause serious complications and can be fatal.

There’s currently no cure for Epidermolysis Bullosa. For now, treatment focuses on addressing the symptoms, including pain prevention, wound prevention, infection and severe itching that occurs with continuous wound healing.

After learning about the condition, I reached out to the traditional venues which I was familiar with for fund-raising efforts with little success. However, after reading the article by Aaron PerLut, Founder of Elasticity, I learned perhaps there was more information I could pass on to help my dear friend to support “Butterfly Children” a term often used to describe younger patients (because the skin is said to be as fragile as a butterfly’s wings.)

This all came about because my friend met a young child and her parents at her place of work with the affliction and now she speaks about how that meeting has changed her life. I have forwarded her the information regarding social fund-raising and have encouraged her to utilize this on-line social media platform to help raise awareness to the cause of Epidermolysis Bullosa.

Content dedicated to people like my dear friend KK and of course the “Butterfly Children.

To read more about social fundraising:

http://www.forbes.com/sites/aaronperlut/2013/07/11/real-time-marketing-a-social-media-layup-that-any-brand-should-not-miss/

To learn more about the affliction:

http://www.rch.org.au/kidsinfo/fact_sheets/Epidermolysis_bullosa/

http://ghr.nlm.nih.gov/condition/epidermolysis-bullosa-simplex

http://www.mayoclinic.com/health/epidermolysis-bullosa/DS01015

Images below—Be Aware—Graphic Depiction of EB

https://www.google.com/search?q=butterfly+child&espv=210&es_sm=122&source=lnms&tbm=isch&sa=X&ei=0NdxUvmON62vsQSvqIDQBQ&ved=0CAcQ_AUoAQ&biw=1920&bih=979#es_sm=122&espv=210&q=butterfly+child&tbm=isch&facrc=0%3Bbutterfly%20child%20disease&imgrc=_

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Posted on October 31, 2013, in Lessons Learned. Bookmark the permalink. Leave a comment.

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