Links and Resources
Here are many other children with similar stories. Please see their sites!
caringbridge.org/visit/kaliannfox
caringbridge.com/mn/nathanolien
geocities.com/dylanhope05/love.html
Erin, Caitlin, and Meaghan Vance
caringbridge.org/visit/danielkerner
haileyandcarter.wordpress.com/
afightforbrandon.com/index.html
Resources:
http://www.rarediseaseday.org/
Batten Disease Support and Research Association (BDSRA)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
Batten Disease Diagnostic and Clinical Research Center
National Tay-Sachs and Allied Diseases Association (NTSAD)
NORD: The National Organization for Rare Disorders
http://www2.massgeneral.org/neurology/childneurology/bios/sims.html
Center for Advanced Biotechnology and Medicine
Mendelian Inheritance in Man Database
stemcellspuhua.com/ – Tiantan Puhua Stem Cell Center
stemcellsinc.com/
I am saddened by your story and admire you strength and courage to find a cure for this disease. I am a Team Mentor with Tastefully Simple and would like to help. I would like to offer fundraising for you. I am offering 100% of my profits if you would like to see if people would be interested in buying our products. I have done five fundraisers in the past two months and think it’s a great way to generate money for the cause. I am in Londonderry and I would be more than happy to set up a fundraiser for you. Please feel free to get back to me at carahayden@comcast.net
God Bless
Cara Hayden