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Taylor's Tale | A victory for one is a victory for all.

A victory for one is a victory for all. Taylor’s Tale: One Little Girl’s Story. Rare is Everywhere Blog. NC Rare Disease Legislators Breakfast. Support Taylor’s Tale. A victory for one is a victory for all. From a small group of family and friends who wished to help one young girl, Taylor King, deal with the many awful effects of Batten disease, Taylor’s Tale and our volunteers have transitioned into a positive force that advocates for the millions of people worldwide who are affected by rare disease.

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Taylor's Tale | A victory for one is a victory for all. | taylorstale.org Reviews

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A victory for one is a victory for all. Taylor’s Tale: One Little Girl’s Story. Rare is Everywhere Blog. NC Rare Disease Legislators Breakfast. Support Taylor’s Tale. A victory for one is a victory for all. From a small group of family and friends who wished to help one young girl, Taylor King, deal with the many awful effects of Batten disease, Taylor’s Tale and our volunteers have transitioned into a positive force that advocates for the millions of people worldwide who are affected by rare disease.

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Taylor's Tale | A victory for one is a victory for all. | taylorstale.org Reviews

https://taylorstale.org

A victory for one is a victory for all. Taylor’s Tale: One Little Girl’s Story. Rare is Everywhere Blog. NC Rare Disease Legislators Breakfast. Support Taylor’s Tale. A victory for one is a victory for all. From a small group of family and friends who wished to help one young girl, Taylor King, deal with the many awful effects of Batten disease, Taylor’s Tale and our volunteers have transitioned into a positive force that advocates for the millions of people worldwide who are affected by rare disease.

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taylorstale.org

1

About Batten Disease

http://taylorstale.org/about-batten-disease

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. What is Batten disease? Batten disease is an inherited neurodegenerative disease that mainly affects infants, toddlers and children. There is no known treatment, and it is. Batten disease is the common name for a group of diseases known as neuronal ceroid lipofuscinoses (NCL). There are many forms of NCL, which is caused by mutations in different genes. What are the forms of Batten disease? Juvenile NCL (Batten disease).

2

Who We Are

http://taylorstale.org/our-story/who-we-are

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. Taylor’s Tale, a 501c3 nonprofit organization, was founded in 2007 by family and friends of Taylor King of Charlotte, North Carolina, who was diagnosed with infantile Batten disease in 2006 at age 7. Sharon King, President. Jane Grosse, CFRE, Vice President. Elizabeth Kovacs, LCSW, Recording Secretary. Stephen King, Corresponding Secretary. Karen Mayer Woods, Treasurer. Margaret Sigmon, MEd.

3

About Batten Disease

http://taylorstale.org/about-batten-disease/about-batten-disease

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. What is Batten disease? Batten disease is an inherited neurodegenerative disease that mainly affects infants, toddlers and children. There is no known treatment, and it is. Batten disease is the common name for a group of diseases known as neuronal ceroid lipofuscinoses (NCL). There are many forms of NCL, which is caused by mutations in different genes. What are the forms of Batten disease? Juvenile NCL (Batten disease).

4

Give Now

http://taylorstale.org/support-taylors-tale/give-now

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. Please give now to support Taylor’s Tale using the following secure form and PayPal link below. I would like to make a donation in the amount of:. I would like this donation to automatically repeat each month. Check here to donate in honor or memory of someone. Check here if this is a memorial gift. Name of person to be honored:. Send acknowledgement via email. Send acknowledgement via postal mail. Korea, Republic of.

5

Our Story

http://taylorstale.org/our-story

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. Taylor’s Tale raises funds for Batten disease. Research and serves as an advocate for the greater rare disease. Community, which includes one in 10 Americans and 350 million people worldwide. The mission of Taylor’s Tale is to provide funding for Batten disease research and to promote awareness of this neurodegenerative disorder and the devastating impact it has on the children it affects. We also serve as advocate...

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battenblog.com

February | 2015 | Batten Blog

https://battenblog.com/2015/02

A blog moderated by Beyond Batten Disease Foundation. BATTEN DISEASE REPRESENTED AMONG FDA PATIENT REPRESENTATIVES. Taylor’s Law: North Carolina’s rare disease advisory council. How to Apply for Social Security Benefits for Your Child With Batten Disease. Batten disease on Good Morning America. Beyond Batten Disease Foundation grantee, Andrea Ballabio, MD, is awarded the 2016 Louis-Jeantet Prize for Medicine. On My Perspective: Debbie Do…. My Perspective: Jacl…. On My Perspective: Jaclynn, siste…. Now he...

ourboysjourney.wordpress.com

Update | ourboysjourney

https://ourboysjourney.wordpress.com/2014/03/18/update

Allowing family and friends to follow ourboys. March 18, 2014. With ourboys 5k/10k coming up in a few weeks we would like to fill you in on what’s been going on around here. We are blessed to have friends and family who help us and support us in many ways. The mealtrain. Even with all of this going on these boys constantly amaze us with their love of life, smiles, laughter and tremendous personalities. We are so blessed to be a part of their lives and share them with you. 8249; Snow Day. Leave a Reply Ca...

ourboysjourney.wordpress.com

Why put on ourboys 5k/10k? | ourboysjourney

https://ourboysjourney.wordpress.com/2014/01/17/why-put-on-ourboys-5k10k

Allowing family and friends to follow ourboys. Why put on ourboys 5k/10k? Why put on ourboys 5k/10k? January 17, 2014. Easy, watch this video and look at all the smiling faces. The footage was taken in 2010, and it’s hard to watch for me(Chris) because of the change in Brandon and Jeremy, but the love and support far outweighs the sadness. 8249; Testimony from yesterday. Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public).

ourboysjourney.wordpress.com

Favorite Pictures | ourboysjourney

https://ourboysjourney.wordpress.com/favorite-pictures

Allowing family and friends to follow ourboys. 4 comments on “ Favorite Pictures. September 30, 2010 at 7:45 am. Awesome job with this site! January 16, 2011 at 5:28 pm. August 12, 2012 at 9:24 pm. They’re growing so fast! May 23, 2013 at 10:37 pm. Two hansome guys hope to see ya in Nashville I miss seeing everyone for a whole year. Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). Notify me of new comments via email.

rareadvocates.org

Passed – Rare Disease Legislative Advocates

http://rareadvocates.org/category/legislation/passed

A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. Advocates in North Carolina Pass State-Level legislation to Aid the Fight Against Rare Diseases. August 18, 2015. School of Medicine to work towards finding more treatments for rare diseases. North Carolina House Bill 823. The House of Representatives APPROVE...

writethehappyending.com

In the News – Write the Happy Ending

https://writethehappyending.com/in-the-news

Write the Happy Ending. Writing to Save the Dreams of Children with Batten Disease. What is Batten Disease? My sister’s story and the work of Taylor’s Tale. On behalf of the rare disease community are frequently covered by the news media and other bloggers. Click on the links to read and watch inspiring stories about our efforts to build a better future for children with Batten disease and millions of others fighting a rare disease. 8220;Charlotte charity Taylor’s Tale inspires new law to create tr...

writethehappyending.com

University of North Carolina School of Medicine – Write the Happy Ending

https://writethehappyending.com/tag/university-of-north-carolina-school-of-medicine

Write the Happy Ending. Writing to Save the Dreams of Children with Batten Disease. What is Batten Disease? University of North Carolina School of Medicine. July 28, 2015. By Laura King Edwards. Rare Disease is Bipartisan. I don’t talk much about my political views on social media or elsewhere. But rare disease is bipartisan. Rare disease traverses not only politics but also religion, race, gender, age, ethnicity and nationality. Rare disease affects us all. Today, North Carolina House Bill 823. Prior to...

battenblog.com

October | 2014 | Batten Blog

https://battenblog.com/2014/10

A blog moderated by Beyond Batten Disease Foundation. BATTEN DISEASE REPRESENTED AMONG FDA PATIENT REPRESENTATIVES. Taylor’s Law: North Carolina’s rare disease advisory council. How to Apply for Social Security Benefits for Your Child With Batten Disease. Batten disease on Good Morning America. Beyond Batten Disease Foundation grantee, Andrea Ballabio, MD, is awarded the 2016 Louis-Jeantet Prize for Medicine. On My Perspective: Debbie Do…. My Perspective: Jacl…. On My Perspective: Jaclynn, siste…. Almost...

ourboysjourney.wordpress.com

2014 Conference Video | ourboysjourney

https://ourboysjourney.wordpress.com/2014/08/22/2014-conference-video

Allowing family and friends to follow ourboys. August 22, 2014. I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association. 8249; 2014 Race results. Jeremy’s First Football Game with marching band. 3 comments on “ 2014 Conference Video. August 22, 2014 at 4:11 pm. Iâ m hoping everyone will share everywhere possible. 1175 Dublin Road â Columbus, Ohio 43215.

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Taylors Tails - Home

Taylors Tails Dog Grooming 2011 -2014. Appointments can be booked between the hours of 09:00 and 16:00 Monday to Friday. Taylor’s Tails Dog Grooming is based on the Black Isle in Tore just north of Inverness. I am a friendly, caring person and I have always loved animals, especially dogs. When I was made redundant in June 2010, I decided that it was time I did something that I love and have a passion for. Mobile: 07990 573 147. E-Mail contact@taylorstails.co.uk. Taylors Tails on Facebook.

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Taylor Stakes Productions | Taylor Stakes Photo and Video is an award winning full service media production house located in San Antonio Texas

Home Taylor Stakes Productions. About who i am.

taylorstale.org

Taylor's Tale | A victory for one is a victory for all.

A victory for one is a victory for all. Taylor’s Tale: One Little Girl’s Story. Rare is Everywhere Blog. NC Rare Disease Legislators Breakfast. Support Taylor’s Tale. A victory for one is a victory for all. From a small group of family and friends who wished to help one young girl, Taylor King, deal with the many awful effects of Batten disease, Taylor’s Tale and our volunteers have transitioned into a positive force that advocates for the millions of people worldwide who are affected by rare disease.

taylorstales-genealogy.blogspot.com

Taylorstales-Genealogy

Like branches on a tree, we grow in different directions, yet our roots remain as one. Each of our lives will always be a special part of the other. Author Unknown. Wednesday, July 6, 2011. Wordless Wednesday, Luc and Aurelie Boudreau. Luc and Aurelie Boudreau (my 3rd Great grandparents). With 10 of their children. Belle Boudreau Deno Senesac is my 2nd Great grandmother. Looking at the picture, on the right, sitting on the chair. She is wearing glasses). Links to this post. Sunday, July 3, 2011. Century&...

taylorstales.com

Taylor's Tales - Home

Treasured Keepsakes for the Child You Love. A Day at the Playground. My Life As A Big Sister. My Life As A Big Brother. A Very Special Valentine. Due to the personal relocation of Taylor's family, and the fact that materials for the company have been packed away, Taylor's Tales will only be offering Child Creations. Featuring children's illustrations) until further notice. Please email Taylor at taylorstales@hotmail.com. Here's a great way to celebrate a major milestone in any child's life! Multiple size...

taylorstalking.wordpress.com

It All Started with a Pound Cake | A daily journal about staying inspried.

It All Started with a Pound Cake. A daily journal about staying inspried. September 19, 2012. The All Inclusive Sweet Potato Muffins. By It All Started with a Pound Cake. These muffins are full of great foods and nutrients necessary for your body, but the best part is that you would have no idea by the taste of them! Along with the list of Ingredients I will also list off to the side why some ingredients are so beneficial. Enjoy them and enjoy your health without missing a thing! 1/2 cup almond oil (.

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Eppinghoff's Entourage

My name is Loren Taylor Eppinghoff. I am a 2001 graduate of Mercer County High school, a 2005 graduate of Georgetown College and a 2009 graduate of Georgetown College. I have a bachelors degree in Elementary education and a Masters degree in Reading and Writing. I got married this summer to my wonderful husband Bo and we have a crazy Jack Russell named Jackson. Wednesday, August 19, 2009. First Week of Kindergarten. Mrs Eppinghoff or Mrs. E. Thursday, July 30, 2009. Welcome to my classroom boys and girls!

taylorstalks.com

Taylor's Talks | Lets talk it out

Lets talk it out. Welcome One and All! August 9, 2015. 8220;Stay true to yourself. People respond to authenticity.” – Barbara Streisand. Welcome one and all to the very first post on Taylor’s Talks. I am very happy you will be joining me on this new adventure. My plan is to blog at least twice a week for the next year. Since I am starting my senior year of college (OMG! In less than a month, I thought that having a place to put down my thoughts would be a great idea. One theme that I will try to maintain...