I Refuse is a campaign used to reach out to others and get them involved in raising awareness for Epidermolysis Bullosa and supporting the research for a cure.
http://www.irefuseeb.org/
TODAY'S RATING
>1,000,000
Date Range
HIGHEST TRAFFIC ON
Saturday
LOAD TIME
1.3 seconds
16x16
32x32
64x64
128x128
160x160
192x192
256x256
Fragile Skin Foundation
Christie Zink
30247 ●●●●●●n Road
Me●●se , Minnesota, 56352
US
View this contact
Fragile Skin Foundation
Christie Zink
30247 ●●●●●●n Road
Me●●se , Minnesota, 56352
US
View this contact
Fragile Skin Foundation
Christie Zink
30247 ●●●●●●n Road
Me●●se , Minnesota, 56352
US
View this contact
BUY YOUR DOMAIN
Wild West Domains, LLC (R120-LROR)
WHOIS : whois.publicinterestregistry.net
REFERRED :
PAGES IN
THIS WEBSITE
19
SSL
EXTERNAL LINKS
20
SITE IP
162.241.217.132
LOAD TIME
1.258 sec
SCORE
6.2
What is the I Refuse campaign for Epidermolysis Bullosa Awareness | irefuseeb.org Reviews
https://irefuseeb.org
I Refuse is a campaign used to reach out to others and get them involved in raising awareness for Epidermolysis Bullosa and supporting the research for a cure.
irefuseeb.org
Getting Involved -
http://irefuseeb.org/advocates-corner/advocacy-resources
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. You must log in. To post a comment. University of Minnesota Foundation. U of M BMT Center. University of Minnesota Foundation. U of M BMT Center. Send to Email Address. Post was not sent - check your email addresses!
Getting Epidermolysis Bullosa in the Media
http://irefuseeb.org/advocates-corner/advocacy-resources/connecting-with-local-media
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Connecting with Local Media. Melinda Warner was featured in The Bryan Times (Ohio). There are multiple ways in which you can use the media to help raise awareness and garner support. Several of these are:. Letter to the Editor. You must log in.
Become an advocate for Epidermolysis Bullosa
http://irefuseeb.org/advocates-corner/advocacy-resources-and-information
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Advocacy Resources and Information. Is one who defends a cause or petitions on another’s behalf. Comes from the Latin word for “VOICE”…it is time to use yours. Below are links that will help you on your path to being an effective advocate. Circulated ...
The Butterfly Fund -
http://irefuseeb.org/advocates-corner/family-support/the-butterfly-fund
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. While it is not always possible to be able to connect with every family, you can provide your support by helping organizations that support families; organizations like The Butterfly Fund. You must log in. To post a comment. U of M BMT Center.
Meet Advocates for Epidermolysis Bullosa
http://irefuseeb.org/advocates-corner/meet-the-advocates
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Meet Advocates for Epidermolysis Bullosa. Christie is a passionate advocate for EB awareness, EB family support, and for the research being conducted near her Minnesota home at the University of Minnesota by Dr. Jakub Tolar. I think about another fami...
TOTAL PAGES IN THIS WEBSITE
19
EB Resources | Kiira Kinkle
http://kiirakinkle.com/eb-resources
This is the story of Kiira and her life with Epidermolysis Bullosa. Kiira’s News Coverage. Kiira’s News Coverage. The mission of DebRA of America is to improve the quality of life for all people living with EB, their families, and caregivers through programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa. Learn More. By Dr Jakub Tolar through the University of Minnesota Foundation (UMF). Learn More. Stanford Genetic Skin Research. We are the largest nonprofit ...
Donate | Kiira Kinkle
http://kiirakinkle.com/donate
This is the story of Kiira and her life with Epidermolysis Bullosa. Kiira’s News Coverage. Kiira’s News Coverage. Current Progress towards the 2016 Goal:. 2,538 / $20,000. OR you can purchase supplies (and other items) for Kiira directly from her. Amazon Wish List: http:/ www.amazon.com/. The calculated annual estimate of costs for Kiira’s bandages, medical expenses, and in-home care is about $20,000. Any amount is very helpful and is 100% tax deductible. Navato Fire District: 425-878-2690. You can also ...
PUCK: Pioneering Unique Cures for Kids
http://www.childrenscancer.org/puck/index.html
PUCK: Pioneering Unique Cures for Kids. Donate Now - help fund research towards a cure. Sign up to receive email communications from PUCK. What's more brutal than hockey? The worst disease you've never heard of: Epidermolysis Bullosa. Pioneering Unique Cures for Kids (PUCK). Recognizes that curing a rare disease like Epidermolysis bullosa (EB), lacks the mass appeal that brings with it public awareness and funding. As a parent-driven initiative of Children's Cancer Research Fund.
Support | EB Resource
http://eb-resource.com/category/support
Follow us on Facebook. EB Resource on Facebook. Posts belonging to Category 'Support'. Why I Heart This Community. February 12, 2016 Posted by laicos. Who doesnt love Valentines Day? Flowers, romance, candy! This weekend, sweethearts and children alike will be delighting in the holiday and just the same, in our house, I have a hunch there will be plenty of heart stickers and chocolate hearts in high demand. We never tire of fun, sweet holiday traditions like that. We all come from different backgrounds, ...
therinaldifamilyblog.blogspot.com
The Rinaldi Family Blog: October 2013
http://therinaldifamilyblog.blogspot.com/2013_10_01_archive.html
The Rinaldi Family Blog. Sharing moments in time spent with the ones I cherish. Help Me Help Others Photo Project. Wednesday, October 23, 2013. Epidermolysis Bullosa, EB. Is a rare connective tissue disorder that affects 1 in 50,000 live births. There are children and adults who face the challenges of EB every day. The slightest amount of friction, even the softest of touches can cause severe and excruciatingly painful blisters. There is no cure. Awareness is key to finding a cure". How can you help?
Butterfly Love.....: September 2012
http://altinkeserlove.blogspot.com/2012_09_01_archive.html
Who would have thought love could be so powerful. Follow, Share and help awareness. The Butterfly Network Here2help. God Bless our Butterfly Angels. The BMT and an amazing families story. Service dogs and Eb. Meet some friends of mine PT.1. Meet some friends of mine PT.2. Sunday, 16 September 2012. Whats happening in our EB community? Well its been a while since my last posting but felt there were a few stories i needed to share with you all. Play Area joy for battling brothers. RIP sweet Rebecca x.
here goes… – ava's wings
https://avaswings.wordpress.com/2013/12/19/here-goes
Update and EB Awareness Week. On here goes…. Melissa on here goes…. Lori on here goes…. Allison on here goes…. Liz on here goes…. Since Ava was born a number of people have urged me to start a blog about our experiences. It has taken me a while to gather the courage but here goes…. She spent the first month of her life in the hospital, 2 weeks in the NICU and 2 weeks on the pediatric unit. In addition to EB she was born with aplasia cutis congenita, a large area of missing skin on her right lower leg.
here goes… – ava's wings
https://avaswings.wordpress.com/2013/12/19/here-goes/comment-page-1
Update and EB Awareness Week. On here goes…. Melissa on here goes…. Lori on here goes…. Allison on here goes…. Liz on here goes…. Since Ava was born a number of people have urged me to start a blog about our experiences. It has taken me a while to gather the courage but here goes…. She spent the first month of her life in the hospital, 2 weeks in the NICU and 2 weeks on the pediatric unit. In addition to EB she was born with aplasia cutis congenita, a large area of missing skin on her right lower leg.
TOTAL LINKS TO THIS WEBSITE
20
I Refuse 2 Quit – I refuse to quit doing everything in life that I am passionate about.
With James P. Manganiello. The Reason I Became a Professional Fitness Educator. And Chief Revenue Officer for I Refuse 2 Quit. I’m James, and I’m going to teach you not only achieve your goals, but surpass them. We are not just a company. We are a movement. A Fresh Approach To Health and Life. Monthly sessions where we uncover the habits & thoughts in the way of a healthy relationship with food & your body. Perfect for you if. Get all of the benefits. I Refuse 2 Quit. I Refuse 2 Quit Programs. Melanie wi...
IREFUSED
How long ago was it? I'd be blatantly lying if I told you I don't know. Well, I wouldn't know the exact number of days, but what I can tell you is it was about 22 months ago (eh, give and take a few days). And up till today, I still have no idea what the hell happened, or what the hell I did. Was it my problem? Or was it not? What are the circumstances which lead to this? Did I miss any signs or clues? Why did this happen? So many questions. But I have the answer to none. When I'm brave (or bored) enough.
www.irefused.com
This Web page parked FREE courtesy of UNITED STATES REGISTERS. Search for domains similar to. Is this your domain? Let's turn it into a website! Would you like to buy this. Find Your Own Domain Name. See our full line of products. Easily Build Your Professional Website. As low as $9.99/mo. Call us any time day or night (310) 598-7991.
I Refused......to Blog!!
I Refused.to Blog! I'm not a writer. I'm a highly-opinionated thinker.so I have a lot to say. Tuesday, June 03, 2008. Change must come to Washington! Sen Barack Obama (6/3/08). This intelligent black man has brought a.Marie back into the blog world. Barack crept up and smacked the shit out of the United States of America. Smart Charismatic. Determined. Educated. Now - Presidential Nominee. Can this be real? Hell yeah it's real. Hillary can now leave planet "WTF" and officially step-de-fuck-down! You have...
I Refused to Die
I Refused to Die. WwwSusieD.com (FOR INFO ON FILM, BOOK, PHOTOS! 19 Winchester St, #806. NOW A 1 HR. DVD FILM. I Refused to Die (The Holocaust: Memory and Legacy). 2009 Mass. Cultural Council grant. FOR MORE INFO SEE www.SusieD.com. Boston.com/news/local/articles/2009/06/28/brookline filmmaker susie davidson8217s documentary focuses on local holocaust survivors/. Boston.com/ae/movies/articles/2008/12/14/a movie to keep their stories alive/. Michael E. Capuano, Member of Congress.
What is the I Refuse campaign for Epidermolysis Bullosa Awareness
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. About I Refuse EB? I Refuse EB was launched in 2012 by EB advocate Christie Zink to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota. By Dr Jakub Tolar. U of M BMT Center. Email...
irefusestamp1plz.deviantart.com
irefusestamp1plz | DeviantArt
Window.devicePixelRatio*screen.width 'x' window.devicePixelRatio*screen.height) :(screen.width 'x' screen.height) ; this.removeAttribute('onclick')". Deviant for 9 Years. This deviant's full pageview. Last Visit: 405 weeks ago. This is the place where you can personalize your profile! By moving, adding and personalizing widgets. You can drag and drop to rearrange. You can edit widgets to customize them. The bottom has widgets you can add! Some widgets you can only access when you get Core Membership.
irefuseto; – One Day at Time, This too shall pass, Addict, Pain
One Day at Time, This too shall pass, Addict, Pain. My Mom’s Cancer…. On My Mom’s Cancer…. On My Mom’s Cancer…. On My Mom’s Cancer…. Four Stars and a Fra…. On My Mom’s Cancer…. September 10, 2015. I refuse to forget how strong I am and how far I have come. My Mom’s Cancer…. August 18, 2015. August 19, 2015. As it is hard to read the text of the pictures I will be captioning each of the photos word for word. Thank you ahead of time for reading. My Mom’s Cancer. She doesn’t mind lying still. She ...Some of...
irefusetobe40andfat.blogspot.com
I refuse to be 40 *AND* fat!
I refuse to be 40 *AND* fat! Monday, June 15, 2009. Started the Next '12 months to change your body' plan today. Fifteen mins easy pedalling on the exercycle - who can't manage that? Got some tummy exercises to do as well and that's it for today. This plan is really well timed for me, given my goal of losing weight before I turn 40 next year. It goes for a year, and my birthday's in July so it's perfect. Thursday, June 11, 2009. I realised something today. I hate bloody stretch fabric! On another note, I...
Refuse To Be A Victim Seminar in Dingmans Ferry, PA
Ask Jeff - Question the Online Whiz from Aplus.net
Register, renew or transfer your domain! 1 Choose a domain name. 2 Select an extension. 3 Select domain status. Get your domain name FREE! Sign up for any web hosting package from. Aplusnet to receive your new domain. SEO and Flash Options Available. Website Live in 12 days. Free Domain Name Registration. Why choose Aplus.net? Low Cost Web Hosting:. The first step in online success. View our shared hosting plans. Professional website design at small. A great website starts with great design. Entice c...
SOCIAL ENGAGEMENT