Stories From Smaller Nonprofits: Taylor's Tale

12/09/2009

The Back-story - Last week I met an amazing women, Laura King Edwards, who told me the story of the nonprofit she launched to support her little sister Taylor. Taylor has Batten disease, a rare neurodegenerative disease, with no known cure. 

Laura and Taylor touched my heart and inspired this series, Stories From Smaller Nonprofts. In the spirit of the season, to give back, the month of December will showcase wonderful nonprofits. It's my wish that together we can help raise their visibility, perhaps find a new volunteer or even encourage a donation or two. Because as Laura says, "Nothing should stand in the way of a dream."

The Taylor’s Tale Story

Story told by: Laura King Edwards: Current board president, founding member and older sister of our namesake, Taylor King; also the blogger, Webmaster and Facebook.

Taylor’s Tale Story was inspired by Taylor King, an 11-year-old native of Charlotte, NC. She was diagnosed with infantile NCL, a form of Batten disease, in July 2006.

Taylor's Tale raises funds for research and promotes public awareness of Batten disease. We are a non-profit, tax-exempt entity pursuant to Section 501(c)(3). We were originally founded by a group of dedicated volunteers in Charlotte, N.C. in early 2007.

For two years, we raised funds for the Batten Disease Support and Research Association (BDSRA). In January 2009, Taylor's Tale was granted non-profit status. Today, we work in tandem with BDSRA and other non-profits to provide financial support for Batten disease research. We have raised close to $200,000 since our inception.

We made it possible for a prominent researcher, Sandra Hofmann, MD, PhD, of the University of Texas SW-Dallas, to begin evaluating and testing enzyme replacement therapy as a cure for infantile NCL. Today, she is in the preclinical studies stage.

Her close colleague, Beverly Davidson, PhD, of the University of Iowa, whose work is very similar to Dr. Hofmann's but for a different form of the disease, just had a major breakthrough for not just Batten disease, but all of medical science. Dr. Davidson figured out a way to cross the blood brain barrier and deliver therapeutic molecules directly into the brain - a discovery that has implications for all brain-based diseases (i.e. Parkinson's, Alzheimer's, brain cancer).

In addition to Dr. Hofmann's work, we have supported or currently support work at Washington University in St. Louis, the University of Rochester and the National Institutes of Health (NIH).

 What is Batten disease?

 Batten disease is an inherited neurodegenerative disease that primarily strikes infants, toddlers and school-aged children. Presently, there is no known cure, and it is always fatal. Batten disease is rarely diagnosed immediately and is often mistaken for epilepsy, mental retardation, retinitis pigmentosa or even schizophrenia in adults.

Onset is characterized by beginning vision loss, seizures, clumsiness and personality and behavior changes. After onset, Batten disease causes continuing physical and mental deterioration, and affected children eventually become blind, bedridden and unable to communicate.

 Why Taylor's Tale?

 All children have dreams. Some dream of becoming astronauts and exploring outer space. Some envision careers as baseball players or firefighters. Others want to be doctors or teachers.

Taylor King, a girl who loves princesses, sparkly jewelry and the color pink, dreams of becoming a pop star or fashion designer. She loves to sing. She believes in fairy tales. Her courage inspired us to fight for a cure for Batten disease.

We are writing her story because we believe that it will help us save children like her. Every child is entitled to dream; every child's story should be a fairy tale.

• Taylor's Tale began as Taylor's story, but along the way, it has become a story for all children. Because nothing should stand in the way of a dream.

Goals

Specifically, we work with the BDSRA to identify promising proposals made by Batten disease researchers and then provide the funding to make their work possible. Taylor's Tale believes that proposals should be built upon a "bench to bedside" philosophy; we want the work we support to work toward the end result of a human clinical trial and a possible cure for Batten disease.

And, we are proud to say that we have been able to help make history over the past several years: we are infinitely closer to a cure - perhaps only a few short years away - than we were when we began.

 Social Media Strategy

 Our small size, limited resources and strong desire to reserve the vast majority of funds we raise for research grants led us to position social media and digital marketing channels as major players in our overall public awareness/marketing strategy. Along the way, we've discovered that these tools are not only the cheapest way to spread the word - they're also the most effective in many cases.

We chose the name "Taylor's Tale" because we want to play the role of storyteller in the fight to cure Batten disease. Social media channels have an uncanny ability to help us tell our story virally - and it allows others to be storytellers, too, which fosters further support and keeps people inspired. Without social media, we'd be left with local person-to-person networking and special events to build awareness.

We'd have our Web site, but alone, that'd be a pretty static tool. Coupled with social media tools like blogging and Facebook, we've been able to reach more people than we would have ever imagined. Our blog, for example, garners feedback from people scattered across the globe. We've been able to position Taylor's Tale as a major source of funding for the research community and a reliable, welcome information source for families whose children are newly diagnosed.

 So what's next? We want to add Twitter to our social media toolkit and continue to enhance our presence elsewhere. We also want to continue pushing a campaign we launched recently called Project E-wareness - a call to people who want to help us build support for Taylor's Tale using social media channels. We even created a pdf e-wareness guide that people can download.

 
More About Taylor's Tale

Taylor's Tale Website

Write The Happy Ending (blog)

Facebook fan page

Quarterly e-newsletter

Taylor's Tale Video on YouTube

Donation Link

Read More Stories From Small Nonprofits

Sidebar: If you want your nonprofit included in Stories From Smaller Nonprofits drop a comment and I'll send you the questions.

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