Links and Resources

Here are many other children with similar stories.  Please see their sites!

nathansbattle.com

jasperagainstbatten.org

taylorstale.com

blakespurpose.org

gradysallstars.com

marypaytonsmiracle.com

nicksbattle.com

connorsbattle.com

curebattensdisease.com

caringbridge.org/visit/kaliannfox

geocities.com/sblanks0

News article

battenangels.com

joeldfamily.homestead.com

sarahinks.com

see penniesfromheaven

Christopher McDonough

Joey and Billy Milani

www.myspace.com/tmntjeff

caringbridge.com/mn/nathanolien

geocities.com/dylanhope05/love.html

Michele Sheridan

smoaksignal.com

Crystal Steever-Frisbie

Erin, Caitlin, and Meaghan Vance

Web page

wittwarriors.com

jordanforbatten.aunz.org

frederik-egold-memorial.net

Our Boys’ Journey

Drew’s Hope

Hayden’s Hope

caringbridge.org/visit/danielkerner

haileyandcarter.wordpress.com/

sachasstory.co.uk

tatyannashope.ca

travisbattle.com

chadshope.com

curtisanthonyshope.org

afightforbrandon.com/index.html

lovefornora.blogspot.com

noahshope.com/fund.php

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

hideandseek.org

GeneReviews

National Tay-Sachs and Allied Diseases Association (NTSAD)

NORD: The National Organization for Rare Disorders

http://www2.massgeneral.org/neurology/childneurology/bios/sims.html

Sandra Hofmann, M.D., Ph.D.

The Davidson Laboratory

Mark S. Sands, Ph.D.

Center for Advanced Biotechnology and Medicine

The Jackson Laboratory

Mendelian Inheritance in Man Database

stemcellschina.com

stemcellspuhua.com/ – Tiantan Puhua Stem Cell Center
stemcellsinc.com/

healthcare.uiowa.edu/labs/davidson/

2 Responses

  1. Cara Hayden says:

    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

  2. Hello, my name is Cheryl Claire Gittens-Jones. My daughter donated a poster of a horse running to help Nicholas raise money a couple years ago. She was around 11 at the time. Her name is Amaranthia and I hope you remember. We still remember your story and your son and are touching base with you and your site. We do not have a lot to share now but willl do so in the near future. We never heard if you got the horse or not but we always remember Nicholas. Life has been a bit hectic but is finally settling down and we hope to be in touch soon. Cheryl and Amaranthia Gittens-Jones
    PS Ama continues to do Art and hopes to continue helping others with her art. peace

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