Stories From Smaller Nonprofits: RE Children's Project

12/05/2010

Stars In the spirit of the season, during the month of December, Diva Marketing opens its virtual doors to tell the stories of smaller nonprofits.Through out the month you'll learn about organizations you may not have heard of .. but each one will will touch your heart. 

This series is inspired by Laura King Edwards who launched Taylor's Tale, on behalf and in honor of her little sister, to raise awareness for Batten disease.  As Laura says, "Nothing should stand in the way of a dream." Through these posts perhaps we'll create a little magic that will help people get closer to their dream.

The Story of RE Children's Project told Rob Petersen, Rob peteresen of Barnraisers, an online social media solutions company. 

The energy and drive of non-profits founders can rub off on you the instant you’re with them. Seth Wohlberg, Founder of the RE Children’s Project, a 501 (c) (3) dedicated to finding a cure for a rare disease, Rasmussen’s Encephalitis, fills that role and then some.

Children's project founders Rasmussen’s Encephalitis is a rare, chronic inflammatory disease that affects one hemisphere of the brain.  It causes frequent, uncontrollable and severe seizures, loss of motor skills and speech, and paralysis on one side of the body.  Rasmussen’s Encephalitis almost always impacts children. It affects Seth’s daughter, Grace.

Photo: Grace with her mom and dad.  

The only known “cure” is a radical brain surgery called a Hemispherectomy in which the affected half of the brain is removed with the hope the brain will re-wire itself and allow the individual to lead a more normal life.  Seth has another idea for a “cure.” Let’s find a real one. 

Rasmussen’s Encephalitis has changed Seth’s life as you might imagine.  By day, he is a partner in a boutique investment bank in NYC.  When that day ends, he begins another job as Founder of RE Children’s Project, his second career.  He is the most driven, hard-working and inspiring person I know.

I donate my time using social media to help spread the word and encourage donations.  If you know Seth, you know he has a very good chance at success.  You also know he writes a great blog and has a blogger’s perseverance.   His organization and situation lends itself to the perfect marriage of social media and grass roots outreach.

Social Media Does Social Good

Here are 3 ways social media did social good for Rasmussen’s Encephalitis through the RE Children’s Project.

1. AUTHORITY AND SEARCH:  RE Children’s comes up high on the first page of Google in a search for Rasmussen’s Encephalitis.  It is in the company of the most advanced scientific and medical research.   If you request Google Alerts for information on the disease, every week it’ll include the RE Children’s blog.  This happens because social media drove search engine optimization.

2. COMMUNITY: Less than 500 people worldwide are diagnosed each year with Rasmussen’s Encephalitis.  Now, many of the affected families all over the globe are part of a community built through RE Children’s social media strategy and networks.  Social media also keeps Seth and his community in touch with Cris Hall, Founder of the Hemispherectomy Foundation, a non-profit that serves the hemisphrectomy community, as well as several other organizations devoted to rare disease and epilepsy research. 

3. WORKING TOGETHER: Seth has put not only a great deal of time into his quest for a cure, but in one short year he has sponsored a first of kinds research conference this past October in which he brought together over 50 global experts across research disciplines to Deer Valley, Utah.  The purpose of the conference was to define a research agenda for the disease. 

He has elevated the global discourse and interest in the disease and is continuing this momentum with another conference in February and a major fundraiser in Connecticut.  Readership to his blog and social networks builds and spikes with each event as social media and grass roots efforts work together to generate higher awareness…and social good. 

Social media works because 1 person tells 5 people who tell 15 people and so on.  During this holiday season, I am asking you to spread the word and do 3 things so the RE Children’s Project sustains its mission to find a cure for Rasmussen’s Encephalitis:

1) Send the web address www.rechidrens.org to 5 friends who have not heard about the effort

2) Read the RE Summary and Facts in the Must Read tab (link 10)

3) Please consider a donation of $10 or $20 through the RE Children’s web site “donate” tab. 

After all, it’s called social media for a reason. 

Logo re children's project  Learn More About RE Children's Project

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 Special wishes to Grace for a wonderful holiday. Thanks for inspiring so many people.

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Stories From Smaller Nonprofits: East Lake Foundation

12/29/2009

Stars2009 holidays are winding down. Social networks from Facebook, Flickr to Twitter helped us share memories  with family and friends. But for some people holiday memories were not so merry or jolly. In the spirit of the season, to give back, Diva Marketing  is showcasing the stories of smaller nonprofits throughout December. 

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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies so we continue to learn together.

East Lake Foundation

The tale of the Miracle of East Lake begins with, Tom Cousins an Atlanta real estate icon who had a "crazy" vision that golf could rebuild an inner city community. The story is told by Mary Dugenske, Director of Marketing and Communications for East Lake Foundation.

East Lake Foundation kids Everyone deserves a chance to succeed – which is why the East Lake Foundation provides tools for Atlanta’s East Lake residents to build a brighter future for themselves and their families."

Just 15 years ago - East Lake was a blighted, crime-ridden area, home to one of the nation’s most troubled housing projects. Only 5% of students met state math standards, and the employment rate (not unemployment rate) was just 14%.

Three key building blocks -  Working with residents, the East Lake Foundation brought hope to this historic community, relying on three key ingredients:

•Quality Education: East Lake kids now enter a cradle-to-college pipeline that includes an early education program that’s become a statewide model and Atlanta’s first charter school. Students learn, excel and graduate – in fact, 97% are the first in their families to attend college!

•Affordable Housing: Families now have access to safe housing choices, plus classes, events and support groups that help them build knowledge, skills and lasting financial strength.

•Community Connections: Neighbors connect and learn from each other – for example, through The First Tee of East Lake, a dynamic program that teaches both golf and life skills while opening the doors to colleges, scholarships and jobs for hundreds of children.

Toward a brighter future -  As East Lake families begin to break the cycle of poverty, East Lake is becoming a community of choice. Violent crime is down 95%, while school test scores and property values have surged. Today’s economic challenges hit working families particularly hard — but thanks to donors and volunteers, the East Lake Foundation can continue to provide tools that build brighter tomorrows. Just $10 a week provides a child with after-school tutoring, educational support and enrichment activities that foster lasting academic success.

Social Media Strategy

Expanding the conversation - Like many small nonprofits, the Foundation has long relied on “social” events (especially volunteer opportunities) to connect donors, partners and neighbors. We’re excited about the opportunities that social media offers to connect with our supporters and broaden our outreach.

Right now, we’re focused on listening and learning about what others are saying about our cause, as well as helping supporters and volunteers tell our story via their blogs and tweets. In 2010, we look forward to expanding the conversation ourselves via our own presence on Facebook, YouTube, Twitter and other social media channels!

EastLakeLogoColor
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Stories From Smaller Nonprofits: Isipho

12/24/2009

StarsYes, Virginia there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know they abound and give to your life its highest beauty and joy. ~ Francis Pharculles, The Sun

There are people who play Santa year long. Many bring their talents and hearts to the important work they perform for nonprofit causes. Throughout December Diva Marketing will highlight stories from smaller nonprofits that light the way for causes but rarely pull mentions in the main stream media. 

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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies so we continue to learn together.

The Isipho Story

Miranda Lynch The story is told by Miranda Lynch who is the 15-year old co-founder and vice president of Isipho. Miranda's story is as much a part of the fabric of Isipho as the children she is passionate about helping.

My name is Miranda Lynch. I co-founded Isipho in December 2009 so I could do everything possible to improve the lives of the children in Nzinga, South Africa after visiting there in August 2008 while on vacation to celebrate my 14th birthday with my dad.

When we first got to Nzinga, all I wanted was to turn around and leave right away.  I had never experienced such hardship or poverty. It was really overwhelming.

But I didn’t have time to be overwhelmed, because the second I got out of the car, a girl my age handed me a saw and pointed to some wood. I understood that she wanted me to cut the wood; something I had no idea how to do, but was embarrassed to admit that, so I just started sawing. As the evening evolved, I realized that the wood I was sawing was the wood we needed to make a fire to cook our dinner. Just making and then cleaning up after dinner was such hard work and took so long that by the time we finished, I was exhausted and went straight to bed. I guess it’s good I was too exhausted to leave!

The next day my life was changed forever, because I met Amahle, the beautiful, smart, precocious two-year-old daughter of our host. Amahle doesn’t have the same opportunities in life that I do -  the opportunity to receive a quality education, the opportunity to have three healthy meals per day, and the opportunity to earn a living and support herself once she’s an adult. Amahle became my little shadow, and I came to love her like a little sister.

When we left Nzinga, I kept thinking about Amahle, and was determined to do all I could to change the inequality in her life; to do everything possible to give Amahle and every other child in Nzinga the opportunities that I believe every person deserves.

  • I know I’m just one American teenager, but I knew I had to at least try, and that I couldn’t just leave and never look back. When my mom and dad saw my passion for this, they agreed to help me help Nzinga overcome their biggest obstacles to a better life.

The municipality where Nzinga is located has identified severe and chronic malnutrition and illiteracy as two of the biggest contributors to the poverty in Nzinga. It seemed so simple to me that if they could grow their own fresh vegetables and had the proper resources to be able to receive an education, their lives would vastly improve. So we decided to start a non-profit to focus exclusively on this small village and to make a difference one child, one family, one food garden, and one classroom at a time.

I decided to name the nonprofit Isipho, which is the Zulu word for “gift,” and the nickname that Amahle gave to me because she couldn’t say “Miranda.” Our Isipho, or our gift, is to help the people of Nzinga create a better, self-sustaining community. 

We do not give them more hand-outs that just extend the cycle of dependence. We give them the tools they need to feed and educate themselves within five years without any outside assistance. Specifically, we provide them with fencing, gardening tools, seeds and gardening training so that they can learn how to garden for themselves, and be able to protect their gardens from grazing animals.They do all the rest. 

We also provide books, school supplies, educational toys and teacher training so that the kids in the village are all going to school and are learning when they get there. Before we started Isipho, only 44% of the villagers had ever attended any school at all, and only seven percent had ever graduated from high school. Our goal is to get 100% of the children in the village enrolled in school, and to increase graduation rates so that their poverty begins to improve.

In our first year we raised almost $20,000, and on just that limited amount of money we’ve been able to send:

~23 villagers through a 3 day sustenance gardening training program with the regional agriculture college.
~Provide fencing, tools and starter seeds for more than 500 square yards of community vegetable gardens
~Provide fencing, tools and starter seeds for 40 smaller, individual family garden

~Deliver over $3,000 worth of books, mathematics tools (calculators, protractors, etc.), and other needed school supplies.
~Encourage development of a local committee that will oversee and lead the programs going forward so that the villagers have ownership and ultimate responsibility for long-term success. More than half of the committee is comprised of women.

Isipho is run by me, my mom and my dad, so far on a 100% volunteer basis.

I’m founder and Vice President of the Board of Directors. I spend most of my time working on public relations and fundraising, and I’m also busy making a short film about Nzinga, using video footage that I shot this past August when we were in Nzinga building vegetable gardens and working in the schools.

My dad, Tom, is President of the Board.  He does marketing and fundraising, and is always spreading the word about Isipho.

My mom, Sheri, is Executive Director of Isipho. She handles all the day-to-day operations.

The three of us work together to plan all of the programs. We’re also putting together a really great Board of Directors right now.

It’s been really interesting to work together with my family like this. We’re a business, so we have weekly meetings, as well as quarterly planning sessions and an annual planning retreat. I’ve learned a LOT about what it takes to run a business, like how to do strategic planning, how to organize fundraisers, what it takes to do even a simple program, and a lot about business etiquette. Most of that I’ve learned by making mistakes and embarrassing myself. But that’s OK – that’s one of the nice things about learning all this stuff as a teenager – people are quick to forgive my mistakes!

Social Media Strategy

Social media is important for us, but also very natural. My dad has worked in digital marketing for a long time, and I’m 15, so I’m on it all the time. We have a limited budget, so social is a great way to spread the story and get people involved. It has been great for us, and also a lot of fun.

It also is a lot of work though, because you have to stay active. Sometimes we’ll find that too much time has passed before we’ve interacted, and other times we’ll find we’re all on our individual Facebook pages saying the same thing.

  • Sometimes being consistent and coordinated is not as easy as it would seem.

 Isipho logo
More About Isipho

Web site
Blog
Facebook page
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Donation link

For the greater good sites from Miranda:: Idealist Gold Star

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Stories From Smaller Nonprofits: St. Vincent and Sarah Fischer Center

12/21/2009

Stars In midst of the chaos of shopping, gift wrapping and cookie baking I invite you to join me on Diva Marketing for a quiet moment to learn about the work of some smaller nonprofits. Throughout December I'll be highlighting stories from nonprofits that light the way for causes that may not be on the front page of the New York Times. 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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies so we continue to learn together.

The St. Vincent and Sarah Fisher Center Story

Suzanne conti for svsf Story is told by Suzanne Conti who has been involved with the St. Vincent and Sarah Foster Center for many years. 

At one time the St. Vincent and Sarah  Foster Center was a foster home for children with volunteers providing Easter Baskets and Birthday toys.  Through the Center's studies they believed their efforts would be more fruitful if the children stayed with their parents as long as they taught the parents how to provide and parent for a successful family life. 

Tutoring of all forms is on-going and the results are wonderful, but the needs for these young Detroit families are greater than ever.  Sr. Judith would be so grateful to any assistance given to help these children and parents, whether it be crayons for the kids after school programs or warm coats and boots.

Providing education and skill development opportunities for at risk children and families in Detroit which have been devasted with the highest unemployment (38%) and highest levels of high school drop out rates (28%).  This charity is going to the heart of the problem- working to strengthen the family unit to become nurturing productive sources for children.

Svsf center photo of girls The odds say many of the children served in the Brightmoor and surrounding communities of Detroit will end up dropping out of school and going on to lives of poverty. Children's Learning Experience helps children beat those odds. Individual and small group academic support and encouragement a positive, nurturing environment that fosters a love of learning. Strict participation standards that include a high degree of parental involvement. The goal of the Children's Learning Experience is to ensure children are performing at or above grade level, and that goal is being met.

Many in the area are living in poverty, unable to support their families. Lack of education is a major component of the generational poverty that plagues this area. The Adult Learning Experience addresses this. The Adult Learning Experience has been designed around the concept of First Steps and Next Steps. In this program we recognize that getting a high school diploma or completing a GED is the crucial first step and the foundation for self-sufficiency. To help our students take that first step, we provide tutoring in math and language.

But a GED is no longer enough to give adults the ability to support themselves and their families. It is an important first step, but only a first step. That's why the Adult Learning Experience program goes further. Building on the confidence that comes with reaching a hard-won goal, we work with our graduates on Next Steps. Whether that Next Step is enrolling in college, attending a vocational school or getting into an apprenticeship program, we support program participants as they take measured, lasting steps toward self-sufficiency.

Values

The values of founders St. Vincent de Paul and Louise de Marillac, continue to guide the expression of the Center's mission.

Simplicity

Honesty, integrity and openness in all of our words and actions

Teamwork

Working together in service to others

Advocacy

Advocating for those with no voice

Inventiveness

Being creative in everything we do

Respect

Showing respect for those we serve and everyone we contact on their behalf

Service Quality

History

The agency traces its beginnings to 1844 when the Daughters of Charity first arrived on the streets of Detroit with only $8.50 in their pockets, with the intentions of opening a school. Within two years, they responded to community need by establishing the St. Vincent Orphan Asylum and a hospital. In 1869, the sisters opened a program to provide for the needs of unwed and/or deserted mothers and their children.

It is this spirit that began the Daughter’s 150 years of service to those in need in Southeastern Michigan. They had no idea that they would be responsible for founding the first hospital in Detroit, Providence Hospital in 1945, the first private psychiatric hospital in Michigan, three schools, an orphanage, and a home for unwed mothers and children in just over two decades.

In 1928, a fire destroyed a summer home located in Farmington Hills that housed children from the old St. Vincent Orphan Asylum in Detroit. Mr. and Mrs. Charles T. and Sarah Fisher of the Fisher Body Family read the news accounts of the fire. Because of their extreme gratitude to the Daughters of Charity and Providence Hospital for saving the life of their fifth son, Thomas Fisher, Charles Fisher took action by donating more than $700,000 to build a new structure at the corner of 12 Mile and Inkster Roads.

The formal opening took place one year after the date of the fire on November 25, 1929. The home reflected contemporary thinking in the institutional care of children. The Center’s Farmington Hills campus remained open as a residential facility for foster children until October 2005. In 2006, the St. Vincent and Sarah Fisher Center brought 150 years of family and child experience to the Brightmoor area and the surrounding community. The statistics for the area are daunting: A 40% poverty rate for children; a nearly 30% drop out rate; and unemployment levels that hover around 36%. Children are at risk, and families are failing under the crushing weight of poverty.

Svsf logo More About St. Vincent and Sarah Fisher Center

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Stories From Smaller Nonprofits: Lendego

12/18/2009

Stars In the spirit of the season, to give back, Diva Marketing  is showcasing the stories of smaller nonprofits throughout December. 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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies.

The Lendego Story

Lendego Dennis_and_Julie_2008 Story is told by the founder Dennis Hodges who explains how he came up with his unique concept where people can directly help others. As Dennis learned some times fate steps in and changes your dream for the better.

Lendego is a 501(c)(3) nonprofit organization based in Atlanta, Ga. that helps meet the needs of others by connecting them with individuals wishing to give. Lendego empowers its donors to choose the individuals, families, groups or organization they want to help.

  • Powered by givers, Lendego positively impacts the lives of real people with real needs. With Lendego’s peer to peer giving platform, funds can be directed to specific individuals, families, groups or organizations in need.

I came up with the idea for Lendego, a nonprofit peer-to-peer lending organization, where individuals hoping to start a business could post their ideas and stories. Those interested could lend money to the individuals and then be repaid at a later date. Hence, the name Lendego. I created my business model, built the website and was ready to launch Lendego when the 2009 flood happened in Atlanta.

Watching the floods and hearing about all the victims so close to home had a very profound impact on me. The incident made me think about all of the individuals who were affected by the tragedies of life on a daily basis and how it was often extremely difficult, if not impossible for those individuals to receive financial help in their time of need.

In October of 2009, I converted my online lending platform to an online giving platform and Lendego, a nonprofit dedicated to peer-to-peer giving was born. Individuals or families struggling with difficult circumstances can contact Lendego for assistance. Recipients can post a need themselves or be submitted by a “sponsor” -- family members, a friend, church, employer or another nonprofit that is working to help meet the individual's need.

After the need is verified by Lendego staff, their story is posted at Lendego; where givers can browse all the needs and select those for which they wish to help. Givers can give the amount they choose to each recipient. Once the need is met, Lendego disburses the funds directly to the family or individual in need. 

Social Media Strategy

Lendego’s grass roots campaign is conducted via Facebook, Twitter and traditional public relations. Right now the organization is working on the Faces of Lendego, each month a different story will be told to the public making them the Face of Lendego. The goal of this campaign is to raise awareness of Lendego and to change the attitudes and perceptions behind peer-to-peer giving.

Lendego logo More About Lendego
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Stories From Small Nonprofits:ChildFund International

12/15/2009

StarsThe holidays are a time to give back to others. In that spirit, Diva Marketing is highlighting the stories of smaller nonprofits through out December. 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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies so we continue to learn together.

The ChildFund International Story

Virginia childfund international Story told by Virginia Sowers, Community Manager, ChildFund International.  For more than 70 years, ChildFund International (formerly Christian Children’s Fund) has been inspired and driven by the potential that is inherent in all children; the potential not only to survive but also to thrive, to become leaders who bring positive change for those around them.

We help deprived, excluded and vulnerable children around the world and in the United States to improve their capacity to improve their lives and have the opportunity to become young adults, parents and leaders who bring lasting and positive change to their communities.

We believe that change must be child-centered. Our distinctive approach focuses on working with children throughout their journey from birth to young adulthood, as well as with families, local organizations and communities globally to create environments children need to thrive.

Our work would not be possible without the generosity of our child sponsors and donors, and we are most grateful for their support.

Social Media

We have used social media extensively as part of our rebranding effort that began last July. In changing our organization’s name to ChildFund International (to align with the ChildFund Alliance), we have found social media to be an important tool to communicate the name change, build the ChildFund brand and also engage more interactively with our supporters.

In July, we launched a Twitter campaign. For every 200 followers we attracted on Twitter, an anonymous donor would provide a gift to country in which ChildFund worked. For example, one gift was a goat to a family in The Gambia. We shot video of the goat’s arrival and shared that back through Twitter, Facebook and YouTube. We gained 2,200 followers in the two-week campaign, resulting in 11 gifts to vulnerable children.

We also ran a Twitter event this fall. In conjunction with the 20th anniversary of the Convention of the Rights of the Child on Nov. 20, we invited Twitter followers to tweet on a right they believed children should have for healthy development. After a set time, we voted on the top 5 tweets and put those back out on Twitter for a bit of competitive retweeting. We’re about to announce the top 2 tweets (as based on the number of retweets). Those two individuals are receiving a coffee table book with photographs of children around the world.


Childfund_logo


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Stories From Smaller Nonprofits: Georgia Canines for Independence

12/11/2009

Stars Through out December, Diva Marketing is showcasing the stories of smaller nonprofits. It's a small way to give back to others who give so much. 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 King Edwards, Taylor's Tale, says, "Nothing should stand in the way of a dream."  Also the nonprofits that are using social media have agreed to share their strategies.

The Georgia Canines for Independence Story

Ramona fa cannines information Story by Ramona Nichols, founder and Executive Director of GCI. My mother and sister have epilepsy, and I experienced through their eyes the stress and isolation that disability may create for every family member. My animals provided a support system of unconditional love, which helped the family deal with the physical, emotional, and social effects of epilepsy.

After studying animal behavior at the University of Georgia, I dedicated my life to training dogs to improve the quality of life of people with disabilities. Photo: Ramona with canines Mary Kate and Ashley

Georgia Canines for Independence is a 501-c-3 nonprofit. Donations are tax-deductible. Georgia Canines for Independence (GCI) provides trained assistance dogs for children and adults with physical disabilities and other special needs. GCI is an all volunteer organization.

Each service dog learns 90 commands and performs skills such as opening/closing doors, turning lights on/off, retrieving dropped or needed items, and pulling wheelchairs. After completing 2 years of training, each canine partner is given away at absolutely no cost to someone in need. GCI also provides a lifetime of instructional support for each service dog team.

Service dogs increase independence. Many of our service dog recipients have gained employment or been able to attend college as a direct result of having a dog to assist them with daily living activities. Assistance dogs also increase self-esteem and social interactions and decrease stress and loneliness. Many service dog owners have also reported improvements in physical health and a reduction in the number of doctors' visits leading to decreased healthcare costs.

Because GCI does NOT charge for its services, our programs are made possible by community support. Insurance does not cover animal therapy or service dogs.

Social Media

GCI has a donation page on Facebook, several videos on YouTube that demonstrate how these amazing dogs help "their people" in daily living, a MySpace page and of course a presence on Twitter.

Logo ga canine More About Georgia Canines for Independence

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MySpace

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Stories From Smaller Nonprofits: Taylor's Tale

12/09/2009

StarsThe 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

Taylor_Laura_Cheetah_2 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.

 Taylor Tale logo
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

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