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Theodore’s Miracle Wristbands

Theodore’s Miracle Wristbands

Get your Theodore’s Miracle wristband, to spread awareness for Batten Disease and support Theodore to keep his Miracle alive!

For more information on how to get a Theodore’s Miracle wristband please email us to theodoresmiracle@gmail.com or message us to Theodore’s Miracle Facebook page by following this link: https://www.facebook.com/theodoresmiracle/

Let’s be stronger together at the fight against Batten Disease!

Thank you all for your support.

Theodore and his Family

The latest issue of the newsletter is now available October 29, 2019
The latest issue of the Illuminator is here. Click here to read about Rare Disease Week, Global Genes, Trnds Symposium and more. (Read More) The post The latest issue of the newsletter is now available appeared first on Batten Disease Support & Research Association.
tkirby
The latest issue of the newsletter is here! September 4, 2019
Click here to read the latest issue of the newsletter, including science updates from the family conference. (Read More) The post The latest issue of the newsletter is here! appeared first on Batten Disease Support & Research Association.
tkirby
July Issue of the Illuminator August 9, 2019
Click here to read the latest issue of the newsletter (Read More) The post July Issue of the Illuminator appeared first on Batten Disease Support & Research Association.
tkirby

Theodore’s Miracle Newsletter

Subscribe to our monthly newsletter to get the latest news from Theodore's life and our efforts to Raise Awareness for Batten disease as well as the latest updates from Batten and Rare Disease communities.

Latest News

Updates from the Batten Community

Juvenile CLN3 disease outreach service (juvenile Batten disease) December 3, 2019
Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile Batten disease (CLN3). Sarah Kenrick is the Outreach Liaison Nurse…
BDFA
LSD Collaborative Manifesto November 25, 2019
As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients with Lysosomal Storage Disorders (LSD). This group works together on…
BDFA
JNCL and Education Book November 20, 2019
We are delighted to have limited stock available of the Erasmus+ funded book on CLN3 and education. It has 34 chapters on a wide range of topics including: Perspectives on education and training Planning education, assessment and intervention for students…
BDFA